Health

konmari-method-japanese-organising-consultant-marie-kondo

Sat Sep 28 13:26:18 IST 2024

Interview/ Marie Kondo, Japanese organising consultant, TV presenter and author of four best-selling books

Q/ How did it strike you that people needed professional help to declutter/tidy up?

A/ It was indeed a surprise for me... because I have loved tidying ever since the age of five. When I was a child, I was truly fascinated by tidying, reading books and magazines, and collecting tidying tips.... Then I started to apply the tips... to tidy up my room and the entire house. When I was a university student at 19, my hobby was to help my friends tidy their homes. For me, it was nothing special. At some point, one person offered to pay me for tidying her home and that was when I realised that my hobby could become a business. People require professional help because they don’t know how to tidy their homes methodically.

Q/ One constant in the KonMari Method is the concept of sparking joy. Please elaborate.

A/ The concept of spark joy is the core of my method. When you tidy with the KonMari Method, you choose only things that spark joy. It means you don’t think whether you should keep something or not―you feel it... touch each item one by one and feel how your body reacts. When you touch the item that sparks joy for you, you can feel your body tingle and all of your cells get uplifted. Listening to your body is most important. The KonMari Method is about not just tidying your home, but also honing your sensitivity to joy. When you finish your tidying... you will be able to choose only the things that spark joy―not only in your belongings but also in your mind, your relationships, your work and all other aspects of life.

Q/ From your experience, please illustrate how decluttering improves mental health and creates better relationships?

A/ I once had a client who wanted to change the direction of her life. She was working in sales for an IT company, but was losing motivation. She was confused and didn’t know what she wanted. That was when she came to me to help her tidy her home. When we were tidying her books, she touched each book one by one and asked herself, “Does this spark joy for me?”After she chose books... the only books she had left were about supporting society, especially mothers. That was how she realised that her true joy was to help mothers raise their children. It was what she did as her part-time job and also what she had done as an intern when she was younger. She was babysitting for a female entrepreneur, supporting her business and personal life. She realised what she wanted was to start her own business for babysitting, which she did! She found her true joy and passion through tidying with the KonMari Method.

Q/ What are your top five tips for living a life free of clutter?

A/ 1. First, envision your ideal way of life that you want to achieve by tidying up. It’s important to imagine how you would spend your time in a tidy house so concretely that you can feel the excitement you would feel.

2. Let go of things that don't spark joy or have fulfilled their role with gratitude for what they have done for you. By feeling deep gratitude for what you have, you will feel more inclined to take good care of what you have, and you will have less trouble putting things back after use.

3. Designate a fixed location for everything as this makes tidying easier and simpler―you can put things back after use without thinking. If you find something in your house that does not have a designated place, decide on a place for it immediately.

4. Store things standing. Store folded clothes standing in drawers. When putting small items such as stationery in a drawer, use small boxes as dividers and store them standing as much as possible. This way, you can see what you have at a glance. It also makes it easier to put things back after use.

5. Fold clothes with care and affection. Folding is not just about making clothes smaller. It’s a valuable opportunity to convey your gratitude to your clothes that support you every day and communicate with them. Try folding your clothes with care, intending to convey affection toward them through your palms.

hoarding-will-be-accompained-by-other-psychosomatic-disorders-dr-t-s-jaisoorya

Sat Sep 28 13:24:00 IST 2024

Interview/ Dr T.S. Jaisoorya, associate professor of psychiatry, NIMHANS

Dr T.S. Jaisoorya has been with the National Institute of Mental Health and Neuro Sciences in Bengaluru since 2013. His areas of specialisation include obsessive-compulsive and related disorders, epidemiology and public health. Excerpts from an interview:

Q/ On a scale of severity as far as obsessive-compulsive disorders are concerned, where does hoarding fall?

A/ There are grades of severity, starting from a tendency to collect a little more than normal to a very severe, obsessive need to collect and a difficulty in discarding. That extremity would be exhibited in less than one per cent of the population. Hoarders should be distinguished from collectors who collect specific thing(s) and arrange them.

Q/ When does hoarding become harmful?

A/ When hoarding perishable items, which begin to rot and attract pests that then lead to infections. There is the possibility of falling over things and injuring oneself. Possessions could also catch fire and the danger would then spread beyond the immediate vicinity.

Q/ How easy/difficult is it to diagnose hoarding in a clinical situation?

A/ It is extremely difficult unless brought to attention by a relative/friend who accompanies the patient. In the rare instance that we make a home visit, we can see the problem for ourselves. Hoarders will defend themselves. Hoarding is also difficult to diagnose because, unlike other mental health issues in which the sufferer is likely to become violent or aggressive or display marked behaviour changes, hoarders will go unnoticed till they start getting into conflicts (for example, because of lack of space) with those they live with. Treating such patients is also difficult because of a lack of cooperation and of self-awareness about the problem.

Q/ With shopping becoming so easy now, is hoarding likely to increase?

A/ That and as more and more people start to live alone or in nuclear families, there is every likelihood of hoarding becoming more common. There are so many online apps now that the risks of expression of hoarding disorder are higher than ever before.

Q/ What about digital hoarding?

A/ All of us collect books, movies, articles, reports, photos in multiple hard drives and discs. We will never go back to look at these, but deleting them is difficult. This is an accumulation that all of us are undertaking.

Q/ What makes hoarding difficult to be recognised as a disorder?

A/ Hoarding has been recognised for centuries. We collect things with the thought that they might be useful later. Or, we might justify it to ourselves that it is not right to waste things. Some among us could reach the point of no return. Hoarding behaviour will be exhibited in adolescent or early adulthood. It is only when one’s hoarding starts to create problems for others and create friction within the family that it is recognised as a disorder.

Q/ Do hoarders display a similar attachment to people and relationships?

A/ On the contrary, a hoarder has replaced attachment to people and relationships with attachment to things, to material possessions. Attachment to inanimate objects is most important to hoarders. They are likely to live alone, be solitary and avoid friends and relatives. They will not invite anyone into their space because of the amount of things they have, and for the fear that it might invite comment from others.

Q/ Is hoarding a standalone problem?

A/ Very often, hoarding will be accompanied by other psychosomatic disorders such as depression. In the elderly, it might be accompanied by dementia.

Q/ What about treatment?

A/ Depending on co-existing conditions, medication and cognitive behavioural therapy together work best.

Q/ What is the one most important tip we can use to guard against hoarding?

A/ Over acquisition happens not because we buy more but because we cannot discard what we have. So be aware about things that you have not used in a while and give them away. Things will not be useful after some time. Learn to recognise that.

hoarding-disorder-causes-symptoms-and-treatment

Sat Sep 28 13:20:16 IST 2024

Of all the desperations that propel human behaviour, few are as addictive as the constant need to surround ourselves with things―to possess and to own. Look around yourself―books you have not opened in years; entangled power cords/chargers you do not know the use for; cassettes and discs you don’t play any longer; the multiple condiments for recipes you have forgotten; mementos that bring back no memories; closets stuffed with clothes, but the common lament that you have nothing to wear; containers with no lids; gadgets you do not know how to use; clothes that no longer fit; footwear you intend to use when you start power walking... the list is endless. And yet, almost every single day you aspire some more, you acquire some more. Mysteriously, the end goal―the happiness and the contentment you seek from stuff―shifts just a bit more.

This turnstile without an exit was listed as a ‘hoarding disorder’ (HD) by the World Health Organization in 2019. It had, of course, existed much before, but was clubbed under obsessive compulsive disorders. An obsessive disorder is one where an individual is caught in the loop of an unwanted thought. It becomes compulsive when you act on that thought. Common examples are the repeated washing of hands to get rid of unwanted germs and the multiple checking of whether a key was turned properly to secure a lock.

The WHO defines hoarding as ‘a mental health condition that is characterised by the accumulation of possessions, which can significantly impair a person’s life’. Technically, it is placed in the International Classification of Diseases-11. It is a category that also includes malingering―the pretence of being sick to avoid work. But that is a story for another day.

Hoarding disorder, elaborates the WHO, is characterised by accumulation of possessions that results in living spaces becoming cluttered to the point that their use or safety is compromised. Accumulation occurs due to both repetitive urges or behaviours related to amassing items and difficulty discarding possessions due to a perceived need to save items and distress associated with discarding them. If living areas are uncluttered, this is only due to the intervention of third parties (family members and cleaners, for instance). Amassment may be passive (accumulation of incoming flyers or mail) or active (excessive acquisition of free, purchased or stolen items). The symptoms result in significant distress or significant impairment in personal, family, social, educational, occupational or other important areas of functioning.

Dr Krishna Dutt, former head, department of clinical psychology, King George’s Medical University (KGMU), Lucknow, said that our need for more was guided by the rise of three I’s. “The first is impatience―we want now. The second is individuality, where we place ourselves first. The third is intellectuality, wherein we use our intellect to justify what we say and do,” he said.

Dutt is dismayed at the constant stream of parcels, ordered by younger members of the family from e-commerce platforms, that show up at his doorstep, but is helpless. “Our perception of needs has changed. We have created a doomed fallacy, like pouring oil into a fire, imagining that the liquid would snuff out the flames,” he said.

Hoarding is not a modern malaise. Social anthropologist Aishwarya Awasthi, who specialises in public health, said, “Our close primate relatives such as orangutans hoard food. In the human evolutionary scale, Australopithecus guarded the stones they used as weapons. Homo erectus asserted ownership over tools made of wood and bones. Neanderthals made cave art to mark their territory.”

In his 2019 book Possessed: Why We Want More Than We Need, Bruce Hood, professor of developmental psychology in society at the University of Bristol, wrote, “We are so lucky to exist... and yet many of us... pursue lifestyles that have the goal of accumulating as much stuff as possible, in the belief that this is our purpose in life.... acquiring more stuff is rarely fulfilling; yet there is an insatiable desire to own more.... We believe the more we possess, the better we will be.”

Daniel Gilbert and Timothy D. Wilson, both American social psychologists and writers, put forth the word ‘unwanting’. “We tend to think of unhappiness as something that happens to us when we do not get what we want; much unhappiness…has less to do with not getting what we want, and more to do with not wanting what we like,” they wrote. “When wanting and liking are uncoordinated in this way, we may say that a person has miswanted.”

It might seem an odd kind of a word. But imagine the many number of times when what you have wanted has not given you the happiness you imagined it would. And thus, you move on to want something different. It stems from the human tendency to overestimate the duration of a thing’s influence on our happiness.

Gilbert and Wilson go on to conclude, “We want, we try, we get, we like. And then with the help of television commercials, we want some more. Wants are underwritten by our beliefs about the relation between getting and liking, and in this sense they are prescriptions for action. They tell us what to do with our time by telling us what to aim for and what to avoid.”

Of course, our desire to own things is not wholly negative behaviour. “Ownership can promote healthy behaviour such as taking pride in one’s acquisitions,” Hood told THE WEEK in an email interview. “For example, homeowners will take pride in their house and treat it much more respectfully than if it is rented accommodation. Pursuing success can be a motivating factor, but it has to be the right work/life balance.”

But it doesn’t take much for ownership to become unhealthy. Say, when it leads to behaviours that are counterproductive, explained Hood. “For example, if you pursue success and wealth at the cost of personal wellbeing (physical and mental) or stable relationships, then you might enjoy the success when it is achieved. But having worked so hard and not fostering good relationships means that you are not necessarily better off,” said Hood.

Indian medical literature on HD is limited. The first (and perhaps only) study was carried out in 2021 under the aegis of the National Health Mission in Kerala. Among the 7,000 plus respondents, the prevalence of hoarding was calculated in at just one per cent. However, as the study’s lead Dr T.S. Jaisoorya, associate professor of psychiatry at the National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru, said this is because hoarding is difficult to diagnose in a clinical setting.

The study noted, “Those with HD were more likely to be older and live alone.... Subjects with HD had higher odds of reporting chronic illness, depression, anxiety disorder, alcohol abuse and tobacco dependence.”

The one per cent occurrence is explained by the study thus: “Although HD is not uncommon in India, this disorder is rarely reported in speciality settings in India, which suggests that awareness and detection should be improved, considering the co-occurring negative correlates and disability among affected individuals.”

In some measure, we are all hoarders. We have more than we need, more than what we remember we have and yet find it difficult to discard. We all struggle with our mounds of possessions and struggle most significantly during festivals to bring some order to it (think the annual Diwali cleaning ritual). But it is only when things begin to impair the quality of our everyday lives might we notice that something is wrong. Also, one person’s hoard might be another’s collectible.

Reena and Diya Mishra, two Lucknow-based sisters, have been struggling to sell their ancestral home for the last five years. But every time they enter the now vacant three-storey building, they end up arguing about what they should retain, what they should give away. The sisters’relationship has grown strained. The house is caving in to neglect. It has been broken into and ransacked. But the sisters struggle with the prospect of giving up what they perceive are the last physical links to their parents.

Attaching memory to possessions is just one reason to hoard. Neha Anand, a Lucknow-based psychotherapist whose clients include the Sports Authority of India and the Uttar Pradesh police, said that hoarding could also be a defence mechanism in which things replace some other deprivation. “We tell ourselves that what seems insignificant today may become very significant tomorrow,” she said. “During the Covid-19 pandemic, for instance, people stored perishable rations that would last them a year, despite knowing that they would be useless in no time. Hoarding could also be the result of our prefrontal cortex (the part of the brain responsible for decision making) not working properly.”

The relationship between hoarding and other mental health challenges is complicated. Shrikant Srivastava, professor of geriatric psychiatry at KGMU, recalls the example of a man who hoarded garbage because he was paranoid that others would rummage through his bins. “Hoarding can be a standalone challenge, which then gives rise to other problems, or hoarding can be a symptom of other problems,” he said.

That list of other problems―resultant or causative―could range from eating disorders to dementia to Prader-Willi syndrome (a genetic disorder that affects multiple systems in the body, including the endocrine, metabolic and neurologic systems).

Archana Shukla, head, department of psychology, University of Lucknow, said that hoarding is also the result of socialisation―the lessons we glean from our immediate social environment. “Almost 90 per cent of our behaviour is modelled on what our parents do. So if they have told us it is bad to throw away things which have been paid for, that is exactly what we will do as grown-ups. Then comes re-enforcement. Suppose, we need something and we do find it in our accumulated possessions, it confirms the learning that holding on to things is good,” she said.

But when does the clutter around us become too much and when should alarm bells ring?

In the second week of September, a teacher at a management institute in Lucknow died by suicide. The note she left behind read, “I became lonely, I stopped cleaning up....”

Gayatri Gandhi, India's first KonMari certified consultant, is the founder of Joy Factory, a first-of-its-kind clutter management company in India. She said that the Covid-19 pandemic had made people realise the link between clutter and mental health as they were locked in with their clutter and had to confront it on a daily basis. “Clients reach out at different stages, each with unique challenges,” she said. “Some come to us feeling completely overwhelmed by the sheer volume of their belongings and are unsure of how and where to begin, while others seek help during major life transitions such as moving, downsizing or welcoming a new family member.” She cites the example of a client who struggled with OCD and “found it difficult to trust herself or let her family handle her things and this is when she reached out to me”.

Traditional economic logic deems that our needs―water, food, clothing, shelter―are limited. It is the wants that are unending. It is they which yield to the Keeping up with the Joneses malaise. And it is in keeping up with the Joneses that we drown ourself in things.

It seems to be a difficult road ahead. But ultimately, whether stuff will own us or we will own stuff is a decision we still can make for ourselves, for our wellbeing.

bullying-in-india-cases-statistics-tips-to-deal-with

Sat Aug 31 13:45:17 IST 2024

Do not send your son to school tomorrow. If you do, he will return soaked in blood or dead.

This chilling statement was made by an eighth grader. He had called up his classmate’s mother to warn her of dire consequences. Just half an hour before the call, he had pushed the classmate in front of a moving truck while on their way back from evening tuition. Luckily, a passerby pulled the classmate away in time and saved his life. Though uninjured, it left a scar on his mind and he did not attend school for the next three days. His parents approached the school trustees and pressured them to take action against the bully before their son could resume school. The bully's parents were summoned. This was not the first time they were called in, as there had been multiple complaints against him. But this was the first time they were facing the trustees, principal, teachers and other parents together.

Parth Lakkad, the bully in question, wells up recalling the incident. Lakkad is 21 now and is preparing for his chartered accountancy exams. A few months ago, he landed a teaching job at a nearby coaching class, thanks to his “exceptional mathematical and accounting skills”, he reveals. Every day, he leaves home in the morning to go to the neighbourhood library, where he spends close to 12 hours studying. We meet over breakfast at a cafe in Mumbai on a pleasant weekday morning. He appears fresh and cheerful, not too overwhelmed by the impending exams, just a fortnight away. He is confident of clearing the exams―his second attempt at the intermediate level. Lakkad was always a good student, scoring 89 per cent in class 10 and 92 per cent in class 12. Merwyn D’Souza, who was the vice principal when Lakkad was in school, remembers him as an academically bright student. But Lakkad was also known to be the “bully whom everyone feared”. “I was the most notorious student in my school,” recalls Lakkad. “I would instigate some boys by passing comments and then get them into trouble. I remember once getting a boy suspended from school, too. We were a gang of three, notorious for causing trouble all the time. I was a big bully in school. I would repeatedly get a boy beaten up by others in class only because I did not like him. Those who had to share the bench with me were afraid of coming to school because of me. I was frequently suspended from school.”

Memories of his higher secondary school days are clear. “I have stored them in a corner deep inside; they keep raising their head every now and then. I can never forget all that I did,” says Lakkad. But he admits that he is a vastly different person today. He almost wants to dissociate himself from the teen he was. “I hit, made up lies about some boys, spoke trash to their face and behind their back, made their day awful. I think I was short-tempered and would consider everyone on my radar an enemy. I had violent tendencies,” he says.

Lakkad was sent for counselling and therapy in school. “The therapy helped me a lot, I think, because nobody scolded me or howled at me,” he recalls. “They were appreciative of me, highlighted my positives and that validation helped. Their words were soothing―my counsellor told me I was intelligent and smart and I could even become the prime minister if I channel my energies positively. And that nobody in society would ever accept a bully like me no matter how good I was in academics.”

With that message in mind, Lakkad left school but has been in regular touch with his counsellors because he needed their guidance often. D'Souza, who also counselled Lakkad, tells THE WEEK that he has seen drastic change in his former student. “He is more mature, understanding and sure-headed lad and is a complete antithesis to his younger self,” he says. “One reason is also that he has found a sense of purpose now, he wants to make something of himself and he is moving ahead with that single-minded goal.” However, it wasn’t easy. Just last year, Lakkad found himself “completely messed up”. “I fell into bad company, and validation suddenly became crucial to me,” he says. “So this group of friends made me do things that I wouldn't have done otherwise, just so that I could be 'qualified' to be with them. I was so involved, that's when I failed in my first attempt at the intermediate level exams. It was my first failure, and the shock was immense. That is when it hit me hard that something was not right and I sought therapy again. I think I could also see the change in me when I stopped giving in to peer pressure and completely cut off from that toxic group of friends. Even today, my anger issues do flare up, but I am getting in control.”

Six months ago, Lakkad met Vishakha Punjani, clinical psychologist and psychotherapist at Astitva Clinic and at Sion hospital in Mumbai. “His mother had called up saying he was exhibiting symptoms such as easy aggression, guilt, crying spells, hitting and slapping, throwing things, abusive language, use of substance and lying, and this behaviour was hampering his day-to-day life,” she recalls. “His friends were not very appropriate for him, and slowly and gradually he realised how people’s acceptance, validation and judgement really mattered to him. He came to me very willingly and told me how he felt like both a victim and an accused for his behaviour. So, the most significant aspect worth noting here is that how as he grew up, he became a victim of bullying―something he was accused of in school. We call this a loop, seen frequently.”

What Punjani found heartening was Lakkad willingly opting for therapy and putting it into practice. “He now understands that he needs to work towards things that are under his control and let go of those that are not,” she says. “I think in that aspect, he has become incredibly self-aware. He has a grip on his impulses and knows how to channel his energy.”

While Lakkad’s bullying tendencies peaked during his high school years, such behaviour can show up quite early. Mohini Khurana, a mother of two in Delhi, tells THE WEEK about her seven-year-old daughter's predicament after coming home from school. She said her friend told her to bring two chocolates to school the next day if she wanted their friendship to continue. “My daughter was anxious and begged me to buy the sweets, only so that she doesn't lose her friend,” says Khurana. Punjani says that's the beginning of being bullied. “Once you give in, they understand that you are the weaker one,” she says.

Shweta Singh, research scholar from Benaras Hindu University, explains how bullying is an intentional and repeated action to harm or make others feel low, and the victim is unable to defend himself. In her research paper, she writes that the prevalence of bullying is very high in India―approximately 50 to 60 per cent.

A recent study in Finland takes this further as it establishes that children who bullied others at the age of eight or nine are more likely to commit violent offences by the age of 31. This was shown in a nationwide birth cohort study conducted at the Research Centre for Child Psychiatry at the University of Turku. Boys and girls who were frequent bullies had an increased hazard for violent offences as opposed to children who never bullied others. Boys who bullied frequently were more likely to commit violent offences compared to those who bullied sometimes.

The relative hazard for boys who were frequent bullies to commit a severe violent offence such as homicide or aggravated assault during the follow-up period was almost three times higher than for boys who never bullied. The study considered the background factors of socioeconomic status and possible childhood psychopathology. The association between bullying and violent offences remained even when the data was controlled for parental education level, family structure and possible child psychopathology. “Our study showed an association between bullying and violent offences both in men and women. These findings further confirm the previous notions that preventing bullying could possibly decrease violent offences,” said researcher Elina Tiiri. The research project aimed to establish a connection between childhood psychosocial problems and mental health disorders, substance abuse issues, mortality, self-harm, criminality, life management and marginalisation in adulthood.

“The main factors that lead to disturbed behaviour are home atmosphere not being conducive, financial concerns, socioeconomic factors, no support from close ones, parental neglect and lack of communication,” says Punjani. “It is crucial for parents to spend quality time with their children because if they don't the child will learn to suppress his or her emotions and vent out in different ways.”

A victim is as much prone to self-harm as is the perpetrator, say experts. Recently, a 13-year-old boy was found hanging in his bedroom by his father. The boy reportedly left a note, saying that he could not bear the “harassment and humiliation” by his teacher and classmate over his poor academic scores. His message―“Papa, please don’t shout at my sister”―speaks at so many levels, including that the parent was strict and difficult to confide in. Yashi (name changed), a class 9 student in one of the posh schools of Delhi, confesses to being bullied in class but admits she has no agency on either walking out on her friends or calling them out for what they do. “I think it is fine. I don’t like it, but it’s okay. They are my friends after all,” she says.

This is indicative of how students consider this as normal behaviour and do not see anything wrong with it. This kind of a thought process emanates from a desperate need for validation and acceptance which a child is unable to get at home and craves for from outside, say experts. Although schools have been undertaking regular counselling and awareness sessions on identifying bullying, the home atmosphere has to be conducive and must facilitate a loving upbringing for a child to grow with a positive outlook towards life.

Of late, bullies have found a virtual playground. The anonymity online has given a free rein to cyberbullies, who many a time turn out to be school students. Kalpana Iyer fumes when talking about her 14-year-old daughter Aadya being almost cyberbullied last year. When the family moved from Malaysia to Mumbai, Aadya was 11. At her new school, she was sidelined by a group of girls. But one girl extended a hand of friendship and Aadya grabbed it without judgement. Last year, a new girl joined her class and Aadya became friends with her, too. “But then something happened towards the end of last year when the first girl and my daughter stopped communicating because the former said something wrong about the second girl, and my daughter stood by the latter. And so, the former friend felt slighted and targeted my daughter on Instagram and WhatsApp,” says Iyer.

Aadya, like any child her age these days, has multiple accounts on Instagram. Only one of her three accounts is public; the other two are private. In one of her private accounts, Aadya started getting messages from a boy. “The messages were flirtatious, invitations for friendship, comments on her looks and body type,” says Iyer. “My girl must have been attracted to the boy. But soon she realised that the boy’s way of texting was similar to her former friend’s. Aadya even confronted her, but the latter denied it.”

Even as the ‘boy’ kept chatting with Aadya on Instagram, she came to know about a WhatsApp group involving her. “My daughter received 48 screenshots of the conversations happening in that group, shared by a girl who was a part of that group but had later exited,” says Iyer. “The screenshots showed how the group members were scheming to bully my daughter through a fake ID and getting her into a sex racket. All this by her own classmates.”

The incident had a deep impact on Aadya, affecting her studies and social life. She turned rebellious, lost her appetite and went into a shell, says Iyer, who then approached the school counsellor. The counsellor told Iyer that this was not the first complaint against Aadya’s former friend. On further probing, the counsellor informed Iyer that the girl was suffering from anxiety because of her parents’ broken marriage.

Professor of law Debarati Halder, founder of Centre for Cyber Victim Counselling, says that among teenagers bullying often takes the form of sexually explicit language that includes not just verbal communication but non-verbal and non-textual communication in the form of photographs, GIFs, memes and emojis. “One main problem I have noticed is how parents normalise it by shaming their children who are victims of cyberbullying by saying things like, ‘you’re not strong enough to face it’ or ‘you could have avoided it’ or ‘you need to develop a thick skin’. That way they are actually pushing their children towards a dark hole,” says Halder. Schools, too, shirk responsibility in case of cyberbullying to save their reputation. Instead of belittling victims or ignoring instances of cyberbullying, the right questions need to be asked―when you were being bullied, did you feel worthless, harassed? Or, did you feel like hitting that person back? Or, did you feel like hurting yourself? We fail to ask these questions and eventually in the mind of the victim, the bully's behaviour becomes normalised.

“In many of these cases I find that the child is coming from a home where bullying takes place on a daily basis between the parents,” says Halder. “So a bully does what he or she does not just for sadistic pleasure but to gain a dominant position among peers.” Especially in the area of cyber bullying, the deterrence is very low because the child feels he or she is not causing any physical harm and also because there is seldom any action taken by schools.

Halder recounts an incident involving a high school girl who was being bullied online. She was unaware that the person behind it all was a boy from her class. “He used foul language and explicit comments and harassed her with multiple messages every day. At times, even at night,” says Halder. “When her parents tried to confront the school about it, the school as usual did not take the matter seriously. Terming it an issue of discipline, they punished both the boy and the girl, thereby implying that both the victim and the perpetrator were at fault here. Generally, it is observed that schools tend to shirk the responsibility if the platform on which the bullying takes place is not hosted by the school and is not monitored directly by the teacher. But if the parents persist with the case, at most, schools admonish the children or suspend them for a few days, the way it happened in this case.” This attitude by the school authorities, says Halder, is encouraging for the bully because they feel complaints against them are resulting in no significant punishment. But the victim continues to feel threatened and loses morale. “As there is no anti-bullying law in India at the moment, it is very difficult to impose a severe punishment on the perpetrator,” says Halder.

This, despite the fact that as per official statistics, India leads globally in the percentage of children reporting cyberbullying. As per Chandrashekhar Pandey, programme director with ChildFund India, “Forty-six per cent of children in India reported cyberbullying by a stranger, compared to 17 per cent globally. And, 48 per cent reported cyberbullying by people they know, compared to 21 per cent of children in other nations. Spreading false rumours, being excluded from chats or groups and name-calling were the top three types of cyberbullying reported in India.”

Experts attribute a noticeable rise in cyberbullying in India to the pandemic, which led to children and adults both taking to online learning and an increased social media usage that came with the mandate of staying indoors. And with India ranking among the highest number of internet users in the world, tackling the negative consequences become a challenge. “Cyberbullying can manifest itself in a number of ways, including sending unpleasant messages, publishing humiliating comments, disclosing personal information, and circulating rumours,” says Pandey. “It is difficult to recognise and prevent since it can occur anytime, any place and to anybody, unlike conventional bullying. And the high rate of cyberbullying in India is partially due to a lack of knowledge and instruction regarding online safety. Many children and adolescents aren’t aware of the dangers of talking to strangers online or disclosing personal information online.”

As per a cross-national study related to cyberbullying released by the World Health Organization in March, titled ‘Health behaviour in school-aged children,’ the increasing digitisation of young people's interactions is the main cause of cyberbullying. “With young people spending up to six hours online every day, even small changes in the rates of bullying and violence can have profound implications on the health and wellbeing of thousands,” said WHO regional director for Europe, Hans Kluge, highlighting self-harm and suicide as possible consequences.

As per the WHO report, younger adolescents are particularly at risk of being bullied. The prevalence of bullying others was highest among boys at age 15 and girls at age 13. While the proportion of boys and girls who are victims of traditional bullying is similar, girls are more likely to be cyberbullied.

The trauma which a victim carries is immense and takes years to get over. Dr Manoj Kumar Sharma, professor of clinical psychology, NIMHANS, Bengaluru, recalls the case of a girl, who as an 18-year-old, became friends with a guy online. “Initially, she enjoyed the online conversations. Then they decided to meet in person,” recounts Sharma. “But when they met, she did not appreciate the overall experience and decided to exit the relationship. Then this person started bullying her and threatened to share her chats. She did not want her parents to know as they were from a modest, middle class background. She took almost one and a half years to reveal her ordeal to her parents, who then approached us. Today, she is 21 but the trauma of the bitter experience she had as a student continues to haunt her. She is taking therapy for depression and stress.”

If increased screen time and lack of awareness about online safety with working parents who are busy all day are at the root cause of this problem, then how does one address it? When THE WEEK asked Lakkad about his knowledge regarding online safety, he said that ever since he got his own smartphone at the age of 13, he has been practising self-regulation. “My day begins with browsing on my phone, and my mother hates it,” he says. “But I remember doing this ever since I was in school because school began in the afternoon and I was allowed screen time in the morning. I know there are certain things I must not watch, but I apply my own agency and decide what’s good and what's not. I monitor my own time and simply cut off from the phone after about two hours of continuous screen time. But I cannot give that up because after a long day of studies, I need a break and that's how I have known to entertain myself for the longest time. I can't change myself now.”

According to bullyingstatistics.org, when it comes to cyber bullying, statistics show most cases are taking place on popular social media sites such as Facebook, Instagram, Snapchat and Twitter. In 280 characters or less, teens can make hurtful and emotionally scarring comments about fellow schoolmates on Twitter. On Instagram, they may leave bullying and mean comments on photos, including body shaming or fat shaming comments. On Facebook, the messenger app makes it easy for kids to send cruel messages back and forth, creating groups where teens can gang up on one another. On Snapchat, known for sending easy-to-delete photos, teens can pass around inappropriate photos of classmates or hurtful images that can fall under various forms of bullying.

One useful tool to help combat social media bullying is the block feature to bar followers on the various platforms. On Instagram, users can turn off comments on posts, which makes it easier to prevent users from leaving harmful comments, making threats or participating in body-shaming commentary. On Twitter, it is more difficult to do so as profiles cannot be made private, but Facebook offers tight privacy settings for users, which makes it easier to keep bullies out. On Instagram, one can also change their profiles to private.

Recognising it as an issue of concern, the Union home ministry launched the Cyber Crime Prevention Against Women and Children initiative, which aims to provide a secure online environment for children. The initiative provides a helpline and a portal where children can anonymously report cyberbullying. The ministry has also launched National Cyber Crime Reporting Portal to enable citizens to report cybercrimes, including cyberbullying and receive prompt action.

How to help bullies

Research finds that bullies have a distinct psychological makeup. They lack prosocial behaviour, are untroubled by anxiety and do not understand others' feelings. Those who chronically bully tend to have strained relationships with parents and peers.

As a psychotherapist, my approach would focus on empathy, self-reflection, and behaviour change.

1. Establish trust: Create a safe, non-judgmental space for the bully to open up about feelings and actions.

2. Identify motivations: Explore the underlying reasons for their behaviour, such as insecurity, peer pressure or past trauma.

3. Raise empathy: Help the bully understand the impact of their actions on others, encouraging perspective-taking and compassion.

4. Recognise patterns: Assist the bully in acknowledging their behaviour patterns and how they can be hurtful.

5. Develop self-awareness: Encourage self-reflection, helping the bully recognise their emotions, triggers and choices.

6. Teach healthy coping mechanisms: Introduce alternative ways to manage emotions, such as mindfulness, communication or problem-solving skills.

7. Foster accountability: Support the bully in taking responsibility for their actions, making amends if possible, and committing to positive change.

8. Monitor progress: Regularly assess the bully's behaviour, providing guidance and encouragement throughout the transformation process.

9. Address underlying issues: If necessary, address underlying issues like trauma, anxiety or depression through evidence-based therapies.

10. Promote empathy and kindness: Encourage the bully to engage in acts of kindness, volunteering or empathy-building activities to solidify positive change.

Remember, helping a bully requires patience, understanding and a non-confrontational approach. By addressing the root causes and promoting empathy, we can support positive growth and behaviour change.

―Dr Vishakha Punjani, clinical psychologist and psychotherapist at Astitva Clinic in Mumbai

youngest-person-to-skydive-solo-with-a-prosthetic-leg-syamkumar-s-s

Sat Jul 27 15:31:26 IST 2024

Following his 16th surgery―a renal transplant―then 21-year-old Syam Kumar S.S., an amputee since age 8, confronted a fatal thought. “I told myself, ‘I have already suffered a lot in life. It is enough,’”he recalls. And then he had another thought―“What if I jump from a height?”

Jump he did, not to his death but to reach greater heights. Kumar, now 23, has two records to his name in the International Book of Records. A resident of Thiruvananthapuram’s Kulathummal village, he is the youngest person in the world to skydive solo from an altitude of 13,000ft with a prosthetic leg and the youngest paragliding pilot with a prosthetic leg.

THE WEEK first met Kumar at KIMSHEALTH Hospital in Thiruvananthapuram, where he had undergone a complicated kidney transplant two years ago. He had come in for a routine checkup wearing a fitted, full-sleeve T-shirt and convertible track pants that can be detached knee down, with the part of the pant below his amputated right leg detached. He wasn't wearing his prosthetic leg, prompting the hospital staff to offer him a wheelchair. “It is totally fine. I can walk. I can run kilometres on my lone leg,”he told the staff, before turning to this reporter with a wink. The puzzled staff, however, insisted on the wheelchair and Kumar accepted it with a smile.

Kumar wasn’t making tall claims though. His life seemed like a rollercoaster ride that only went downhill, but he soared and how. His travails began since birth. “I was born with one leg glued to my buttocks,”said the high-endurance athlete who was born to a manual labourer, Sreekumar K., and a former drawing teacher, Saralakumari S.S. “I had plenty of other issues at birth, including a malformed renal system, a spinal tumour, and congenital scoliosis (a sideways curvature of the spine owing to abnormal vertebral development before birth). I had my first surgery just 19 days after birth.”

Saralakumari, his mother, recalled that she could hold her baby boy only on the 17th day after birth, as he had to undergo numerous tests. “Soon after, he was taken into surgery because he had issues with passing urine,”she said. “Within two months, he had another surgery to remove a layer between his buttocks and leg, which is similar to the webbing on a duck’s feet.”

Kumar was soon diagnosed with duplex kidney, wherein two ureters drain urine from a single kidney to the bladder. Normally, it is one ureter per kidney. Kumar had this issue only in his right kidney. Those with this congenital condition are at a high risk of urinary infections. Urinary incontinence, which is leaking of urine because of poor bladder control, is another issue that comes with it.

Since Kumar had been facing issues releasing urine, doctors created an opening from the bladder to the outside of the body when he was just eight months old. “I would keep clothes at the opening,”recalled Saralakumari. “Every five minutes, they would get wet. There would be a load of clothes like that to wash every day. Then, imagine my boy’s situation.”

Despite his physical challenges, Kumar was an active child. “He would crawl all over,”said Saralakumari. “When he was one and a half years old, doctors attempted to straighten his leg. This was planned earlier, but because of renal infection, it got delayed. By the time the surgery for his leg was done, it was too late, and doctors could only partially straighten it.”

By the age of five, Kumar had been trained to perform a procedure called clean intermittent catheterisation (CIC), wherein the urine is drained via a catheter inserted into the urethra, past the sphincter and into the bladder. Once the urine is drained, the catheter is removed. CIC is vital for reducing bladder pressure and draining residual urine, thereby preserving kidney health.

However, in the schools he attended, the “smelly kid”went through great difficulties. “I was always taunted for my wet pants,”he said, recalling memories of being the lonely kid sitting in a corner of the classroom. “That period was incredibly depressing. I had no friends. People found me disgusting because of my condition and wouldn't sit near me. Even when I was in class five or six, I had to clean my own bench and the areas where I sat after everyone went home. I had to wait until class eight to have a friend. I was so happy, but that person also moved away after some time. It was heartbreaking.”

Saralakumari has been Kumar’s biggest support system right from the beginning. His father struggled with alcoholism in the initial years―though he later overcame it―which added to Saralakumari's burden. “My mother took care of me in every possible way,”said Kumar. “She supported me throughout the journey in ways I can't even imagine now. Despite her efforts, people criticised her, suggesting she should have aborted the pregnancy if she had known the difficulties that lay ahead.”

Kumar, therefore, made the decision to become an amputee out of love and care for his mother. He was all of eight then. “My mother has asthma and had to carry me everywhere in our village, which is a hilly area with difficult terrain,”he explained. “But I could walk on one leg, and I decided to go for it. People often questioned my mother, asking why she allowed the amputation at such a young age.”

Kumar underwent surgeries at regular intervals during his school years to address health issues, including the removal of a tumour from his spine. He had a neurogenic bladder, which refers to urinary bladder problems because of a disease or an injury of the central nervous system or peripheral nerves involved in control of urination. And that led to end-stage kidney disease. By the time he reached class 10, his kidney function had reduced to less than 25 per cent. His bladder wasn't large enough to hold the urine produced by his kidney, and in 2016, he underwent bladder augmentation at a hospital in Bengaluru. He also had surgery to remove his undescended testis at that time.

His life then revolved around the “rooms”of his house, hospitals, operation theaters or school. But then Kumar decided to no longer be boxed in and pushed himself to try new activities, including clay modelling and swimming. It was, however, cycling that propelled his transformation. “One day, while I was sitting inside my home, I noticed a few children playing outside on the road,”he recalled. “They were skidding around with their bicycles, having a lot of fun. I decided to join them. With my artificial limb, I tried to skid just like them. The kids found it very amusing, but it motivated me to show them that I could do it, too.”

He developed a newfound interest in cycling. “Despite financial challenges and relying on my (disability) pension, I saved up for five months and eventually bought a small bicycle,”said Kumar. “I taught myself to ride and over time, I also learned to repair and upgrade it, including adding gears.”

Soon, Kumar started cycling uphill to places like Ponmudi and Gavi. Push-ups and other strengthening activities became part of his routine. During this phase, he also took up mountaineering. “In 2019, at the age of 18, I participated in the ‘Save Alappad’campaign―a protest against excessive beach mining by two public sector companies―and cycled for 230km within 12 hours,”he recalled. “For that long journey, I carried a catheter to urinate. I was bleeding; my urine tube was filled with blood. I also had scratches on my body. But even then, I chose to continue riding.”

Kumar’s kidneys were weak and failing. His creatinine levels were dangerously high, and he anticipated kidney failure at any moment. He enrolled in a psychology degree course at MG College in Thiruvananthapuram, but his worsening kidney issues put a stop to his studies. It did not, however, dent his zeal for a life of adventure. “As kidney failure seemed inevitable, I decided to embark on a journey (from Thiruvananthapuram with no destination in mind) said Kumar. “I wasn't sure how long it would take, but I packed urine bags, catheters and saline water for bladder management over 30 days. Carrying around 20 bottles of 500ml saline and other essentials, I built a carrier for my bike and set off. Within the next six days, I covered over 1,000km despite my deteriorating health.”

But by the time he reached Kannur, Kumar began vomiting, he recalled. “As night fell, I grew very weak and eventually called the police when I started losing consciousness,”he said. “They tracked me down, found me in my room, and rushed me to the hospital. They had contacted my mother using the emergency contact information I had set on my phone's screensaver.”

Soon, Kumar began undergoing dialysis treatment. To facilitate this, an AV fistula―a surgical connection between an artery and a vein―was created in his arm. With an AV fistula, blood flows directly from the artery into the vein, increasing blood pressure and flow through the vein. This increased flow and pressure caused the vein to enlarge, resulting in one hand being noticeably broader and larger than the other.

Dialysis once again confined Kumar to indoor life. A kidney transplant remained the ultimate solution. He found a donor in his mother, and social groups initiated crowdfunding for the transplantation. But there were significant medical risks involved, and not one hospital that Kumar had approached had agreed to do the transplant. Finally, Dr Satish Balan, consultant nephrologist with KIMSHEALTH, Thiruvananthapuram, came on board. Kumar, by then, had already undergone five surgeries related to his kidney problems.

“In Kumar's condition, we faced several challenges when he came for the transplant,”explained Balan. “The first issue was [that] he only had one limb. After the transplant, we had to ensure he could walk, which was crucial.”The second issue was related to his primary kidney problem, which stemmed from an abnormal bladder, added Balan. “The bladder's abnormal function caused increased pressure, leading to kidney damage,”he said. “To mitigate this, we needed to ensure the bladder could accommodate a new kidney without damaging it. One approach was bladder augmentation, where we used intestinal tissue to enlarge the bladder. This procedure makes the bladder non-functional, requiring manual urine removal daily. Kumar was already trained for this, which solved half of the problem, as such training is challenging without early initiation and habituation. After the transplant, this procedure would continue to prevent infections in the new bladder and kidney, presenting another hurdle we had to overcome―ensuring the bladder functioned normally post transplant by regularly draining urine through a tube.”

Kumar being a high endurance athlete presented Balan with a third challenge. “Given his involvement in extreme sports and other activities, we opted for a steroid-free transplant,”said Balan. “Steroids can interfere with muscle growth and strength. A steroid-free transplant carries higher risks of rejection and post-transplant complications. However, without steroids, his muscle function and athletic capacity are likely to remain unchanged from before the transplant. Fortunately, Kumar didn't encounter any issues afterward, and we have continued with a steroid-free regimen, maintaining stable kidney function.”

Balan noted that Kumar has shown a positive attitude and has been diligent in following medical instructions and taking medications regularly. “He is also physically the fittest person I have seen, including doctors and patients,”he said.

Kumar did not take it slow after the transplant though. Instead, he decided to skydive, that too solo. “Within three months after the transplant, I began working out and doing push-ups,”he recounted. “I resolved that I had to jump solo. This thought kept me awake for six to seven days straight, fully aware of the risks and medications involved.”

Kumar decided to allocate the remaining funds from his crowdfunding campaign, originally earmarked for his transplant and recovery, towards pursuing this high-risk jump. After thorough research, he realised that he needed a skydiving licence from the United States Parachute Association (USPA). “I spent around four months contacting them, sending hundreds of email,”he explained. “I detailed my journey, described my training regimen, and showcased my progress. However, their initial responses were disheartening as they cited concerns over taking the risk. Eventually, I managed to persuade one of their board members, who requested my complete medical history and certificates. Upon review, he advised that I first try skydiving at a designated drop zone before obtaining the licence.”

Of the many requests Kumar sent, only Skydive Thailand responded positively. Andy Pine, the chief instructor there, assured Kumar of their support, advising him to undergo wind tunnel training before arriving in Thailand. “So, I underwent wind tunnel training, which was quite expensive in Hyderabad,”recalled Kumar. “Hours of wind tunnel training were required to learn how to stabilise the body in the air. Mastering this balance is crucial, involving a deep understanding of aerodynamics where even the slightest finger movement affects stability. Solo skydiving can be daunting; panic can lead to disastrous consequences, from potential blackout due to G-forces (gravitational force equivalent) to the inability to deploy the parachute. The risks are substantial. Despite the health and medication risks, I decided to take the leap.”

Following the wind tunnel training, Kumar travelled to Thailand for his inaugural jump in November 2023. Prior to that, he had to clear a written exam for USPA licence. Additionally, he underwent canopy training and other necessary preparations. When the time came for his first jump, his instructor asked whether he preferred to jump solo or with him. And, Kumar insisted on jumping solo.

Kumar controlled his free fall with the prosthetic limb in the first two jumps safely. But during his third jump, he started experiencing a dangerous spin. “And, when I opened the parachute, it tangled with my leg. Luckily, it was my normal leg, and I managed to untangle the canopy and land safely within a gap of 12 seconds. The instructor then suggested I do more wind tunnel sessions.”

The Thai Police facilitated his wind tunnel training. Following this, Kumar successfully completed three more skydives. During these jumps, he encountered challenges such as unexpected winds, but his quick thinking enabled him to land safely.

However, after these experiences, skydiving instructors informed Kumar that he could no longer skydive with his prosthetic leg because of control issues, particularly as advanced jumps require precise airborne manoeuvres. They advised him to learn to jump without his prosthetic leg. “It is like imagining an airplane flying with one wing,”he said.

Kumar returned to India owing to financial constraints. But his Thai instructor Pine is hoping for his return. “Regardless of whatever he achieved here, one of the things that I noticed is he is a person who has obviously encountered many, many obstacles in his life and never given up his tenacity, his attitude towards life,”he said. “I mean there are so many people who find any excuse not to do stuff and the thing is Kumar has got every excuse and yet it just doesn't seem to faze him; he tries and he pushes himself to his limit. And if only more people would do that, the world would be a far better place…. We will see you when you get back because it is an honour.”

Kumar, on his return to India, started working as a videographer. He also got a drone pilot licence. Later, he received an invitation to participate in paragliding at Bir Billing in Himachal Pradesh, the world’s second-highest paragliding site at 5,000ft above sea level. There, he completed the basic paragliding course (P1 and P2) and became a certified paragliding pilot.

Kumar’s prosthetic leg, which he had on him in Thailand, was damaged recently. Currently, he is using an older version that varies in height, as acquiring a new one would cost around 117 lakh. Despite that, Kumar remains steadfast in his ambition to obtain a skydiving licence. “I have completed only six jumps. I need 24 jumps to qualify for the basic licence [from USPA],”he said, hopeful of finding a sponsor to support his journey. “I will need to train my body and adjust my technique to jump without the prosthetic leg. This will require extensive effort and additional wind tunnel training. Nevertheless, I am pursuing my dream of freefalling from a height of 42,000ft.”

Who needs wings when there’s will!

danish-scientist-and-nobel-laureate-morten-meldal-interview

Sat Jun 29 15:56:54 IST 2024

Interview/ Morten MeldAl, Danish scientist and Nobel laureate

Chemistry is everything, including when you fall in love.

That is Danish scientist Morten Meldal’s oft-repeated statement. His wife, Phaedria Marie St Hilaire, also a distinguished scientist, agrees. Dominican-born Hilaire, founder of the nonprofit The Professional Women of Colour (ProWoc) network, says that “the chemistry of love” between them ‘clicked’ during their shared lab endeavours.

Meldal, along with American chemists K. Barry Sharpless and Carolyn R. Bertozzi, won the Nobel Prize in 2022 for their groundbreaking discovery of 'click chemistry,' a revolutionary method for constructing complex molecules. This innovation holds immense potential to shape our future. But in an exclusive chat with THE WEEK, Meldal, 70, remains humble, characterising it as something simple. Excerpts:

You often mention that your curiosity and early interest in science was instilled by nature, on your grandfather’s farm.

Yes, I have a lot of wonderful memories from my childhood. That’s why I love nature so much, in particular in connection with being in nature. I have very clear images of sitting on a cherry tree, eating the wild cherries and then going to the beach and swimming. I think that childhood should be a happy time where you learn all of these things and get a feeling for what the world is all about.

Your Nobel Prize was for click chemistry. Building complicated molecules is something very important in different domains. Your discovery introduced an efficient and time-saving method to create these complex molecules. What is click chemistry and how has it revolutionised the field?

I always use the comparison with Lego, the building blocks that originated in Denmark. You can put Lego blocks together and construct new architectures from them. In the same way, we can take a block, say a functional protein or carbohydrate, which is like a signalling molecule, and put that on the protein with a click reaction. So, we click them together, like snap, snap, snap, and we don't need to use any of the normal chemistry to do that. We just use click reaction again and again in this process, and we get very complex architectures with multiple functions. So, we make small molecular robots out of building blocks. The thing is that it could not be done before. So, it is an entirely new field that you open up with this click reaction. It is a new type of chemistry, which is completely perpendicular to all other chemistries. So, it doesn't influence the other chemistries, and the other chemistries don't influence this chemistry. So, we can do these normal chemistries first and then we can click things together to make very complicated architectures without any kind of conventional chemistry around it.

In 2002, Sharpless and you independently came up with the ‘copper catalysed azide-alkyne cycloaddition’, which is now regarded as the crown jewel of click chemistry, and won the Nobel in 2022. Did you expect it?

No. We did not have any idea. In 2006, we could see that the number of citations was increasing exponentially. So, something happened. Of course, biologists got hold of it, material scientists got hold of it and so on. And in 2013, Chemistry and Engineering News was talking about click chemistry as Nobel Prize-worthy. But then nothing happened.

This is the first time the Nobel Prize is given for making something simple. Normally, it is the opposite; [you are awarded when] you make something complicated.

Could you please share how some of the most significant applications of click chemistry emerged over the last two decades?

In Halle, there is work going on to develop aeroplane paints, which are self-healing. So, if you get a crack in the paint, instead of getting corrosion in the wing, it should glue together again and click. So, you get a new polymer instead of corrosion. The other thing is in materials―a lot of coatings are clicked today. You also have [newer] strong materials [created using click reactions]. You have drugs, which are now today synthesised almost exclusively in water, instead of all these organic solvents that you have to recycle and distil. You can now do these kinds of complicated reactions in water due to the selectivity of the click reaction. So, you don't need a lot of extra things around your molecule to make the reaction work. Well, it is already in use in the development of two compounds [to treat] liver fibrosis and lung fibrosis. We have two compounds that are in the clinical trial stage, and these are made exclusively in water by clicking together relatively complex carbohydrates and aromatic compounds.

How is this being used in cancer treatment?

Two groups are working on cancer treatments at the moment. One is using the click reaction to attach a radioactive atom to a ligand (an ion or molecule attached to another) that searches out the cancer cell and kills it. So, by searching out the cancer cell, and then sitting on the cancer cell, it can deliver the radioactivity where it wants it and kill the cell. The other one is not our click chemistry, but the TCO chemistry, where you can first attach one component on a cell, and then you have the component sticking out. Then you come with the other component and that component will react. And, in the process, it releases a cytotoxic compound that kills the cell. So, when it clicks, it kills and it can only click on the cells that are sick.

What are the applications of click chemistry in Alzheimer's treatment?

In the development of Alzheimer's treatment methods, we are using click chemistry to hold on to molecules, to maintain the structure of molecules that shall recognise the Alzheimer's plaque and dissolve them.

A lot of DNA research areas are also being explored by employing click chemistry.

Yes, DNA can be conjugated, so we can click together two molecules―a protein and a DNA or two pieces of DNA, or RNA and DNA―you can mix any way you like.

heartnet-india-pvt-ltd-director-arindam-sen-interview

Sat Jun 29 15:54:22 IST 2024

Interview/ Arindam Sen, director, Heartnet India Pvt Ltd

The Internet of Things has seamlessly integrated into our lives, extending from our kitchens to our very bodies. One of IoT’s most significant impacts is its role in the early detection of diseases. Indian innovators have developed significant solutions tailored for India, considering the country’s size and diversity. In an exclusive interview with THE WEEK, Arindam Sen, director of Heartnet India Pvt Ltd, discusses one such solution by his firm for early heart disease detection. Excerpts:

Could you explain how IoT-driven solutions enhanced by AI facilitate early heart disease detection?

In recent years, heart disease has become a significant issue in India, leading to a high number of deaths. According to the World Health Organization, cardiovascular diseases are responsible for almost 25 per cent of all deaths in the country. A key obstacle is identifying heart problems at an early stage, particularly in remote areas with limited health care access. This is where IoT technologies like Heartnet step in. Heartnet collects crucial information such as heart rate and blood pressure, and transmits it to a monitoring platform via the internet. AI subsequently examines the data for any discrepancies and alerts health care professionals. This technology has the potential to improve health care access in remote areas, enabling patients to track their cardiac health and avoid severe complications in the future.

What prompted the development of this innovation?

The abrupt increase in the incidence of cardiovascular disease among close friends and family members, particularly among those in younger age groups, prompted a serious consideration of strategies for prevention. Subsequent research into lifestyle factors, the impact of diabetes and familial predisposition to cardiovascular issues culminated in the development of the Heartnet.

Could you elaborate on the role AI plays in this mechanism?

Heartnet’s AI algorithms can precisely identify indications of heart disease, such as coronary artery disease, atrial fibrillation or any abnormalities in the heart. This allows for early treatment, minimising the chances of life-threatening complications and enhancing patient results. Using AI technology assists in predicting the chances of developing heart conditions by examining a person's information such as medical background, way of living and genetic elements. This enables doctors associated with Heartnet to customise treatment plans and advise patients according to their specific risk factors, consequently decreasing the chances of developing future heart diseases.

AI is not only utilised for early detection and prediction but also for remote monitoring and management of heart conditions. Remote monitoring of cardiac complications can greatly enhance the treatment of chronic conditions. Through regular screening of a patient's health records, these algorithms identify trends that could indicate a high risk of developing heart diseases, enabling health care professionals to intervene early and avoid potential heart problems.

role-of-artificial-intelligence-in-drug-discovery-development-and-treatment-of-rare-diseases

Sat Jun 29 15:51:38 IST 2024

Jins Antony and Grace Janilet from Ayur in Kerala are in a race against time, seeking a cure for their firstborn, Jion. They are acutely aware that unless medical science expedites its efforts to find a miracle drug for their child’s worsening condition, he will die soon. Jion, 10, suffers from Duchenne muscular dystrophy (DMD), a genetic disorder characterised by progressive muscle degeneration and weakness. “This condition arises due to alterations in a protein called dystrophin, which helps maintain muscle cell integrity,” says Antony, 42, who runs a paint shop. DMD can affect all kinds of muscles, including the diaphragm―the muscular partition separating the thorax from the abdomen, and which aids breathing. And, that makes it fatal. “Currently, there is no definitive cure for this rare disease,” says Antony, adding that time is running out for Jion, “as Indian DMD patients rarely survive beyond 20 years”.

In the past, Jion, like any other kid his age, would run and play around. But these days, he struggles to walk without support. His eyesight, too, has diminished in recent years. At school, while other children play, he sits and watches them. He does not join them for fear of falling and breaking his bones. He still rides his bicycle, but is unsure if he can continue his favourite activity for long.

DMD is caused by a mutation in a gene that encodes the dystrophin protein, and is located in the X chromosome. Since the gene is tied to the X chromosome, DMD usually affects individuals assigned male at birth―since they have XY chromosomes, they receive only one X chromosome from their mothers and therefore have no other functioning gene to compensate.

DMD symptoms usually show up by the age of three, but children are usually diagnosed at the age of six. Jion was diagnosed with DMD only when he was seven. “We were unaware of this disease until then,” said Antony. “My wife and I did not sleep the first two months after we learned about the test results.”

Steroids are the mainstay of DMD treatment today. Gene-based therapies like exon-skipping to produce usable dystrophin protein are available, but are too expensive. For instance, exon-skipping therapies, such as deflazacort, at its approved dose, can cost approximately Rs 7.5 crore per year. Antony has already shelled out a fortune for Jion’s treatment in the last three years. With no cure and the long-term expense and effort involved, caring for a loved one with DMD can take a toll on any family with limited means. The thought in itself can be daunting and depressing. In July 2023, a family of four, including two children, died by suicide in Kerala’s Malappuram after the childen were diagnosed with DMD. Antony and Grace, too, were depressed in the initial months of Jion’s diagnosis. “However, after a phase of depression and lamentation, my wife and I decided not to give up,” said Antony. “We face every day with the hope that the medical community will soon come up with an affordable drug for my son’s condition, before it is too late.”

The good news for many families like Jion’s is that there are several Indian companies working for accelerated and cheaper drug discovery with the help of artificial intelligence. One such company is Peptris―an eight-member virtual preclinical research firm that focuses on helping develop drugs for muscle-related rare diseases like DMD.

Drug discovery is a slow process, taking 10 to 15 years. It involves research, development and production of molecules, which are like keys that open a disease’s lock. So, labs are finding the right key among many for a specific disease or modifying an old key to fit a new lock. And, chemistry plays a vital role here because of its ability to decode molecular interactions. Many of the drugs developed in the last century come from molecules derived from natural sources like plants, bacteria and fungi. As the discovery and development of these molecules slowed, manmade molecules were brought in. But they are not enough.

In drug discovery, various strategies are employed to identify potential drug candidates. These may be broadly classified into three types: target-based drug discovery, phenotypic drug discovery and repurposing existing drugs. Target-based drug discovery involves understanding the pathophysiological (abnormal changes in body functions) basis of disease and identifying specific protein targets that play a role in the disease phenotype. Phenotypic drug discovery focuses on observing the effects of potential drugs on whole cells or organisms without prior knowledge of the target. The repurposing existing drugs strategy, the cheapest among the whole, involves evaluating drugs developed for specific therapeutic purposes for potential use in new disease areas.

Shridhar Narayanan, cofounder and scientific adviser of Peptris, told THE WEEK that in diseases like DMD, the startup is employing two of the above-mentioned strategies with the help of AI to create a potential drug. “One is to use artificial intelligence to find novel chemical molecules for particular targets, and second is repurposing, in which we examine already existing drugs for some of these disorders,” he said. “We have put a priority on finding some drugs that can be repurposed and be given to DMD-affected kids at the earliest.”

Riyaz Syed, founder of Hyderabad-based AI-first drug discovery company, Centella AI Therapeutics, said that other than muscular dystrophy, idiopathic pulmonary fibrosis and amyotrophic lateral sclerosis are other rare diseases for which research powered by AI is being used in target identification and target validation.

Time travellers

The drug discovery value chain is extensive, beginning with the phase of identifying and validating disease targets. These targets refer to proteins responsible for the disease. Once a target is identified and validated, the focus shifts to designing new drugs tailored to that target. “This involves starting with molecules and progressing to lead optimisation and the selection of preclinical candidates,” said Syed. “However, the initial design may not yield a viable drug, requiring multiple iterations and optimisation of various parameters, such as absorption, distribution, metabolism and excretion. This iterative process, known as the DMTA cycle (design, make, test, analyse), involves designing molecules for disease proteins, testing them in laboratory settings and analysing the results. Typically, this process involves seven to 10 iterations, depending on the complexity of the disease.” What AI does is to streamline this process by reducing the number of iterations and minimising human intervention, added Syed. “Instead of conducting numerous experiments, AI can predict which experiments are most likely to succeed in the laboratory, thereby accelerating drug development and reducing delays in delivering therapies to patients,” he said.

Shridhar, who has a postdoctoral degree in neuro-pharmacology and heads a not-for-profit organisation―Foundation for Neglected Disease Research―said that in the past, researchers would perform limited chemistry experiments and conduct high-throughput biology tests, which is essentially testing thousands of molecules at once for their efficacy against a specific drug target. “They would test compound libraries (collection of stored chemicals) synthesised for various purposes for each new target they identified. Now, with AI, things are different,” he said. “While you may focus on a specific protein, the number of chemical molecules you can explore is vast, running into billions. This increased chemical diversity, facilitated by AI, significantly boosts the chances of finding successful compounds. When it comes to biological assays, setting them up, validating them and screening millions of compounds is no small feat, both in terms of time and money. However, AI now allows for this to be done with larger compound libraries at a fraction of the cost and time.”

Shridhar has been part of teams that have created 18 clinical candidates for infections, diabetes, oncology, inflammation, pain and cardiovascular diseases. Interestingly, Peptris, which raised $1 million in a funding round in December, was formed as a result of a 'dad talk' Shridhar had with his cofounder Narayanan Venkatasubramanian, an IIT Delhi alumnus with more than two decades experience in system architecture and software development. “Our children attend the same school, which led to us to becoming family friends,” he said. “This connection gradually evolved, leading us to engage in discussions beyond school-related events. We began inquiring about each other's professions, interests and the latest developments in our respective fields, fostering a deeper understanding of each other's domains. So, it was our children who initially brought us together, and from there, the foundation for a novel idea was laid.”

Along with Shridhar and Venkatasubramanian, data science expert Anand Budni and algorithm expert Amit Mahajan form the core team of Peptris. Together they developed an AI and machine learning-based computational platform to rationalise and provide insights into experimental data in molecular biology and further make predictions to generate hypotheses for newer experiments to be done.

“We are now able to screen over a billion molecules essentially employing AI,” said Venkatasubramanian. “Instead of physically conducting tests, we can now perform these tests virtually. Over the last four or five years, the number of chemical entities, or novel chemical entities, has increased significantly. However, this abundance of information isn't easily searchable. For instance, if you want to find out which molecule would work for a specific protein, you would need to sift through a vast amount of data to provide the best possible results. So, the challenge lies in developing algorithms that can conduct such searches effectively.”

The software expert added that there is a need to represent molecules in searchable formats to determine the best matches or approximate matches for a given protein. Then, further analysis and testing would be conducted to validate the findings. “Essentially, it is like conducting a mini search within the vast chemical space available,” said Venkatasubramanian. “You could think of it as organising a vast collection of books in a library and cataloguing them in a specific way to facilitate easy retrieval. In this context, AI is akin to creating a catalogue for these molecules, making unique representations for each of them.”

Peptris has meticulously gathered millions of data points, encompassing structural details, annotations and properties data related to proteins, molecules and their interactions sourced from public databases. It now has the capability to accurately predict binding affinities in both protein-small molecule and protein-protein interactions. This essential capability is what they use to expedite drug discovery in different domains.

Syed pointed out that the efficiency that AI brings to the drug discovery process is invaluable. “Our generative algorithm produced approximately 15 molecules targeting a specific cancer type, and we synthesised them accordingly,” he said. “The success rate from these synthesised molecules was approximately 80 per cent, which is notably high compared with the traditional success rate of 35 to 50 per cent. Our method consistently achieves success rates ranging from 75 per cent to 80 per cent, demonstrating its efficiency in generating novel and patentable molecules. Subsequently, we synthesised these molecules in the laboratory and conducted tests. Among them, approximately three molecules exhibited superior activity compared to the standard drug.” Centella has a special focus on diabetes, inflammation and gastrointestinal infections, too. “We are working on four targets based on these areas,” he added.

Shining results

Syngene, founded in 1993 and headquartered in Bengaluru, is a leading provider of contract research services as well as integrated discovery, development and manufacturing solutions for various industries, including pharmaceuticals, biotechnology, animal health care, consumer goods and agrochemicals. Recently, Syngene made a significant breakthrough in combating pancreatic cancer by collaborating with Panbela, a US-based clinical-stage biopharmaceutical company, to streamline the production process for its pancreatic cancer drugs using AI technology.

Before partnering with Syngene, Panbela was manufacturing its small molecule candidate SBP-101 for pancreatic cancer using a complex 15-step synthesis process. On engaging Syngene for chemical development, chiral purity checks (essential for quality control of drugs) of early batches revealed a chiral purity of only 85 per cent, falling below regulatory standards.

Syngene revamped the synthesis approach with the help of Syn.AI, the Bengaluru-based firm’s exclusive platform tailor-made to streamline data-centric drug discovery. This helped in preventing the formation of undesirable intermediates, and led to the production of SBP-101 with a chiral purity of 98 per cent, albeit with 17 synthetic steps. Subsequently, Panbela tasked Syngene with reducing the number of reaction steps to expedite the drug's time-to-market while maintaining chiral purity. Syngene's chemists initiated the optimisation process, and eventually enabled the synthesis of SBP-101 in just six steps.

“This patent, which outlines a more concise synthesis method for SBP-101, offered numerous advantages, including faster manufacturing, expedited access to drug supply, expansion into new indications and the establishment of a scalable, efficient, and cost-effective manufacturing process to support future commercialisation efforts,” said Jennifer K. Simpson, president and CEO of Panbela.

Future is now

According to market research and consulting firm MarketsandMarkets.com, the global market for AI in drug discovery is estimated to reach $4.9 billion by 2028, showing a substantial increase from $0.9 billion in 2023.

Meanwhile, researchers like Shridhar attest that significant transformations have occurred in the drug discovery domain in recent years. Specifically, he highlights the disruptive impact of newer and advanced technologies like ‘click chemistry’, which offer a rapid, straightforward and adaptable approach to synthesising new molecules, thereby expediting the drug discovery process.

“What click chemistry has achieved is remarkable,” he said. “Over the past five to 10 years, there has been an exponential increase in the number of synthesisable molecules that can be produced with just two or three steps and lower energy requirements in a standard laboratory―all thanks to click chemistry. This advancement has resulted in a significant surge in the volume of data generated in the chemistry domain.” For example, in 2017, the largest available libraries contained fewer than a billion compounds, whereas now they contain approximately 43 billion to 44 billion compounds, he said. “This number continues to escalate rapidly, demonstrating the accelerated evolution of synthesisable and purchasable compounds, which in turn creates a superhighway for discovery processes,” said Shridhar.

Furthermore, researchers emphasise that the abundance of data leads to the emergence of more solutions in drug discovery. They also assert that they do not foresee AI replacing humans in fields such as drug discovery.

“The drug discovery process carries profound implications for life and death. We cannot entrust artificial intelligence with making decisions on our behalf,” said Syed. “At each stage, every action taken by artificial intelligence undergoes thorough scrutiny, meticulous analysis, and only advances to the next level with human intervention.”

stroke-care-needs-better-public-awareness-and-access-to-timely-and-affordable-treatment

Sat May 25 19:35:19 IST 2024

On a fateful morning in June 2023, Khairunnisa Jalaluddin (name changed), a 55-year-old homemaker from Gudalur in Tamil Nadu, woke up with a pounding headache. As she tried to sit up, a wave of dizziness engulfed her. “To our horror, we discovered that her one side was paralysed, and her speech was slurred,”recalls Shajir, Khairunnisa’s son, who rushed her to the nearest primary care centre. “At the hospital, they asked us to get a CT scan, which was not available locally. So we crossed the border and travelled approximately 50km from our village to a hospital in Sulthan Bathery in Wayanad in Kerala.”There, Khairunnisa was diagnosed with stroke and promptly administered thrombolytic therapy, wherein clot-busting medications were injected directly into the clot to dissolve it.

In current scientific understanding, an intravenous medicine that can break up a clot has to be given within 4.5 hours of the symptoms showing up. Typically, an expensive and strong clot-busting drug like recombinant-tissue plasminogen activator (r-tPA) is used to dissolve the clot and open the artery to restore flow to the brain. In some cases, particularly when the clot is too big, this drug is not effective. And if the treatment is given after six hours of the onset of stroke, then catheters and clot retrieval devices (stent retriever) are inserted through a 1mm hole in the artery of the groin (femoral artery) to reach and open the blocked segment of the brain artery.

In Khairunnisa’s case, a large, proximal cerebral artery was blocked, and the Wayanad hospital referred her to Baby Memorial Hospital (BHM), a tertiary care centre in Kozhikode for an advanced procedure called mechanical thrombectomy. By then, almost 14 hours had passed since the onset of Khairunnisa’s symptoms. Sulthan Bathery to Kozhikode is almost 90km, including a 14km-long Thamarassery Ghat, which has nine hairpin bends and is notorious for traffic jams. An ambulance carrying Khairunnisa started from Wayanad around 8pm and reached BHM close to midnight. A team, led by renowned neurointerventional surgeon Dr Shakir Husain, had been waiting.

A pioneer in the neurointerventional arena in India, Husain removed the blood clot inside the artery in a 90-minute procedure, utilising endovascular devices and an advanced image guidance system. “This was a one-of-a-kind case,”recalls Husain. “The patient had a stroke in the morning. Normally, the best candidates for a mechanical thrombectomy procedure are those who get it done within three to four hours of the onset of stroke symptoms. But this was done almost 18 hours after the stroke event. We could do it because she had good collaterals and we could open up the artery completely.”

Khairunnisa suffered a stroke on the left side of the brain, leading to right side paralysis and a loss of speech. Her recovery process started immediately after the procedure, says Husain. Nearly 10 months post the stroke, Khairunnisa’s paralysis has been completely reversed, and she has regained her speech.

Over the past two decades, Husain has successfully treated numerous stroke patients like Khairunnisa. However, he points out that while a limited number are saved, thousands of Indians, particularly those from rural areas, succumb daily owing to the inability to reach hospitals with adequate facilities or trained doctors in time. He cites the case of Khairunnisa, who had to travel over 140km to access treatment.

Strokes are broadly classified into two types: ischemic and haemorrhagic. Ischemic strokes occur due to a blockage of a blood vessel, resulting in inadequate blood flow to a part of the brain, and accounts for about 80 per cent of all strokes. Haemorrhagic strokes are caused by the rupture of a blood vessel in the brain, leading to bleeding into the brain tissue. Ischemic stroke is primarily treated with clot-busting drugs and clot removal procedures, while haemorrhagic stroke requires treatments to stop the bleeding and control intracranial pressure.

In cases like Khairunnisa’s, who had an ischemic stroke, timely restoration of cerebral blood flow using reperfusion therapy is the most effective treatment for salvaging brain tissue that is not already dead. But reperfusion therapy needs to be done within the ‘golden hours’as its benefits diminish over time.

“However, the biggest impediment we face is the lack of public awareness,”says Husain, who insists that the public should be able to detect a person showing symptoms of stroke and act immediately. “Sometimes, you may have a government-run or private hospital with good infrastructure, but community participation is lacking. Community participation entails that the community should assist a stroke case in reaching the appropriate hospital in time. It is a race against time. Another critical factor is the internal condition of the brain’s circulation, known as collateral circulation. When there is robust protective collateral circulation, we can still achieve positive outcomes even if the patient arrives after 10 hours.”But there have been cases where optimal outcomes could not be achieved despite the patient reaching the hospital within 30 minutes because the collateral circulation, which provides alternative routes for blood flow, was not robust enough, he adds.

Globally, stroke ranks as the second leading cause of death. The global burden of stroke is more pronounced in the developing world, which accounts for 86 per cent of deaths. However, due to the lack of reliable reporting mechanisms and other factors such as small sample sizes in existing epidemiological studies, accurately estimating the stroke burden in India and other developing countries poses a significant challenge.

According to a study published in the Indian Journal of Medical Research in 2017, the cumulative incidence of stroke ranged from 105 to 152 per one lakh people per year, with the crude prevalence ranging from 44.29 to 559 per one lakh people across different regions of the country in the past decade.

“As we speak, a stroke occurs somewhere in the country every 20 seconds, with one stroke-related death occurring every two minutes,”says Dr M.V. Padma Srivastava, former head of neurology and chief of the Neurosciences Centre at the All India Institute of Medical Sciences, New Delhi. “These statistics are comparable to those of road traffic accidents or heart attacks.”Moreover, with just over 3,500 neurosurgeons and 1,300 neurologists in India, there exists a significant disproportionality in access to stroke care across different regions.

Pioneers like Husain are actively working to address this gap by striving to increase the number of neuro-interventionists through initiatives such as the Stroke & Neurointervention Foundation. However, Srivastava emphasises that bridging the substantial “health divide”exceeds the capacity of any single individual or group of doctors.

Srivastava cites a pivotal study published in The Lancet in 2017, which identified a significant shift in disease patterns. Between 1990 and 2016, non-communicable diseases such as cancer, heart attacks and strokes have emerged as the leading causes of death, surpassing communicable diseases like malaria and tuberculosis. She further observes that while Covid-19 momentarily diverted attention, non-communicable diseases have regained prominence post pandemic. Additionally, Srivastava highlights a worrying trend: a notable increase in the number of young stroke patients in India.

“The percentage of strokes among young individuals in western countries is 3.3 per cent. However, in India, published data estimates a percentage between 20 and 27. This indicates that one-fourth of all strokes occur in young people, which is a substantial figure,”she says.

Experts underscore the economic burden posed by an increasing number of young stroke patients owing to their longer life expectancy post stroke, higher lifetime costs per case and the significant impact on their quality of life and productivity. This necessitates sustained health care and support services. Experts like Husain stress the importance of policymakers analysing and identifying different cost factors associated with stroke and implementing health policies aimed at reducing the disease burden on India.

“An efficient stroke care system is essential for stroke management,”says Husain. “India must be prepared to address this catastrophic illness, the incidence of which is predicted to increase significantly in the next 20-30 years. Since stroke is also the leading cause of permanent neurological disability in adults, the reversal of stroke symptoms through thrombolysis and the delivery of organised stroke care becomes paramount nationwide.”

HUB-SPOKE AND SCOPE

According to Srivastava, the “workhorse for stroke treatment initiation”is a plain CT scan. “While significant advances in imaging have occurred, often implemented in high-end hospitals accessible to a privileged segment of society, it is essential to recognise that strokes also occur in underserved areas where access to CT scans may be scarce or non-existent,”explains the Padma Shri awardee, who spearheaded initiatives like the Smart India app, CARE-DAT and the IMPETUS programme during her tenure at AIIMS. These initiatives aimed to bridge the gap and make low-cost stroke care accessible in distant towns and villages of India.

The intention behind these initiatives was to broaden the scope of stroke care by training physicians in district hospitals to diagnose and manage acute stroke using a low-cost model. “If there is at least a district hospital equipped with CT scan facilities, it can serve as a base in the stroke care system,”says Srivastava. “A plain CT scan can detect any bleeding in the brain, along with ensuring optimal blood pressure and sugar levels. We have developed a user-friendly criterion that can be utilised in district hospitals to provide tele-stroke care via platforms like WhatsApp.”

Tele-stroke services are widespread globally, but they often come with high costs. Husain highlights successful “hub-and-spoke”models existing in countries like Switzerland. “In Zurich, patients are initially directed to hospitals in their local areas. Only cases requiring advanced treatment are transferred to the University Hospital. This system conserves and effectively utilises resources,”he explains.

Srivastava underscores that the effectiveness of such peripheral centres in managing primary care during stroke cases determines the success of such a model. In India, this necessitates a strong partnership between public and private hospitals.

Himachal Pradesh served as the launch pad for such a model in India in 2014, but the southern states have established it better, according to Srivastava. However, issues persist in many other regions, particularly related to public awareness, which undermines the effectiveness of the system. “The public needs to know how to recognise a stroke,”she insists. “Without patients seeking help, treatment cannot be administered. Therefore, part of the outreach programme aims to increase awareness of stroke recognition.”

Another critical juncture is when a patient arrives at the nearest district-level hospital. The AIIMS team developed a set of protocols or checklists for stroke care at these satellite hospitals. These checklists include essential equipment such as thrombolytic drugs, blood pressure monitoring devices and point-of-care systems to check blood sugar. “Additionally, trained personnel are required. Hence, we introduced the Smart India app, which helps physicians understand these protocols efficiently. This process involves not just neurologists but also physicians as the first point of contact,”explains Srivastava. This mechanism is currently being implemented nationwide to involve physicians across the country.

The glamorous aspect of stroke management often revolves around procedures like clot removal, clot dissolution and surgery. However, the essential steps that can be implemented in all hospitals involve patient positioning, timing of blood pressure measurements and addressing the requirements for sodium, potassium, fluids, electrolytes and nutrition, while also focusing on infection prevention and complication avoidance. “Research has shown that simply implementing stroke unit management can increase survival rates by 40 per cent,”says Srivastava. “This approach requires dedicated personnel who are knowledgeable about potential complications, can anticipate and prevent them, and effectively manage them when they arise.”

The medical field has already witnessed robotically performed neurointerventional procedures, encompassing diagnostic cerebral angiography, carotid artery intervention and the treatment of intracranial aneurysms. Experts are optimistic about the future potential of teleoperated robots, which could revolutionise the treatment of neurovascular diseases by providing remote precision and dexterity. These advancements have the potential to eliminate physiological tremors and operator fatigue, ultimately improving patient outcomes. However, experts emphasise that immediate action is imperative to address the current needs of the population, as waiting for future innovations is not an option.

LOOK FOR EARLY SIGNS

A stroke can strike suddenly, seemingly out of nowhere. However, there are certain types of ischemic events known as transient ischemic attacks (TIAs), also known as mild strokes, that act as warnings. During TIAs, the blockage of blood flow to the brain is temporary, resulting in short-lived symptoms that do not cause permanent brain damage. “During a TIA, you may experience temporary vision problems or numbness on one side of your body, which then resolve on their own. Because these symptoms come and go, they can be easily overlooked,”explains Srivastava. “However, if you have risk factors such as high blood pressure, high blood sugar, or a family history of strokes or heart attacks, it is crucial to take these symptoms seriously and seek medical attention. Don't wait for a major event to occur.”

Sedentary lifestyles, unhealthy habits such as smoking and excessive drinking, and lifestyle diseases like hypertension and diabetes are often considered the primary culprits behind many stroke cases. Genetic factors and advanced age can also increase the risk of stroke. Additionally, there are unusual cases where vigorous neck movements, overextension or incorrect positioning of the neck can lead to injury to blood vessels and subsequent stroke.

Terms such as ‘barber chair stroke’or ‘beauty parlour stroke’have been coined to describe certain unique cases where individuals experience strokes after undergoing activities like hair washing or receiving “customary neck clicks”from their barber. In October 2022, one such case gained attention in India after neurologist Dr Sudhir Kumar from Hyderabad shared a case in which a woman developed stroke symptoms, starting with dizziness, nausea and vomiting while shampooing her hair at a beauty parlour.

There is another concerning scenario related to neck movements that could lead to a stroke. “Indians have a tendency to use mobile phones even while driving two-wheelers, often tilting the neck to one side and supporting the phone with one shoulder,”says Husain. “I have witnessed cases where a sudden movement of the neck after a prolonged phone call resulted in a stroke.”

Srivastava outlines various factors contributing to the increase in stroke cases, including pollutants and climate change. She also cites sleep disturbances and irregular sleep patterns, particularly prevalent among the younger population due to excessive use of digital devices late at night, as a frequently underestimated yet significant factor leading to strokes. Individuals with unconventional job patterns, especially those that disrupt the sleep cycle, also face a heightened risk of stroke.

TIME FOR INTEGRATION

A patient’s rehabilitation journey following a stroke must commence promptly to maximise recovery and regain lost functions. Typically, this process involves a combination of therapies, such as physical, occupational and speech therapies, tailored to meet the individual’s unique needs and goals. However, there is a growing consensus on integrating treatment modalities from traditional medical systems like ayurveda into the rehabilitation process to offer holistic healing.

Individuals who have had a stroke are at a heightened risk of another. “Not all strokes are the same,”says Srivastava. “Some may involve major blood vessels, such as the internal carotid artery, while others may affect smaller branches within the brain, known as small vessels. Strokes can be caused by various factors, including blood clots in the heart (cardioembolic), infections or vasculitis (inflammation of blood vessels). Treatment and prevention strategies are customised to the specific cause of the stroke, in addition to employing general management techniques.”

Dr M.R. Vasudevan Namboothiri, former director of Ayurveda Medical Education in Kerala, says that ayurvedic interventions can effectively disrupt the pathogenesis―the process by which a cause develops into a disease or disorder―and significantly reduce the risk of stroke recurrence.

Experts like Srivastava also advocate for integrating interventional approaches from traditional medical systems with physiotherapy to enhance patient recovery. “We need to adopt an inclusive approach,”says Srivastava, who, along with Rama Jayasundar, who heads the NMR (nuclear magnetic resonance) and MRI department at AIIMS, has conducted studies on the pathobiology of classical ayurvedic interventions in post-stroke recovery using magnetic resonance and other techniques based on structural, functional and chemical biomarkers.

Dr Anwar A.M., founder of RAHA CFAAR Ayurveda Hospital in Kochi, is a staunch advocate and practitioner of integrating different systems and specialties to enhance the stroke rehabilitation process. At RAHA, a diverse team of professionals, including ayurvedic doctors, physiotherapists, acupuncturists, neurologists, physiatrists, psychologists, speech therapists, respiratory therapists, yoga instructors, naturopathy specialists, masseurs and other support personnel, ensure a comprehensive treatment approach.

“When a person is admitted here, doctors from various specialties assess them,”says Anwar. “We review their medical history and ensure continuity of necessary medications. For instance, if someone requires insulin, we ensure they receive it and monitor their blood values. We maintain a chart for this purpose. Every morning, doctors conduct rounds, after which the patient undergoes various therapeutic modalities.”

Ajaz (name changed), 46, a former artist who previously managed a famous Kochi-based comedy troupe, is undergoing rehabilitation at RAHA. To better support his family, he had become an Uber driver. “In the last few years, he had been trying to migrate to the US and had been working tirelessly to secure funds and create a safety net for us,”says his wife Shaheen (name changed). “His sleep was irregular due to his nighttime driving. Then, last year, on the evening of April 18, while taking our younger son for football training, he suffered a stroke.”

Ajaz had an ischemic stroke on the left side of the brain, resulting in paralysis on his right side. “He initially received thrombolysis, but unfortunately, he later developed a condition called haemorrhagic transformation of ischemic stroke,”explains Anwar. Following thrombolysis, a decompression craniotomy―a neurosurgical procedure involving the removal of a part of the skull―was performed to relieve pressure on his brain. Subsequently, due to breathing difficulties, a tracheostomy was performed. To address feeding issues, a nasogastric tube, followed by a gastrostomy, was inserted.

The stroke resulted in speech impairment and short-term memory issues in Ajaz. Psychotherapy was initiated, and by July, he showed significant recovery in terms of movement. However, he continues to have speech and memory issues, with stiffness in his right hand and right leg. During THE WEEK’s visit to RAHA, Ajaz underwent a treatment protocol comprising physio-based gait training, followed by a nerve-stimulating and pain-relieving acupuncture session, and then a medicated-oil ayurvedic procedure aimed at reducing stress and nervous tension. Additionally, he participated in a robot-assisted arm exercise designed to provide biofeedback, a mind-body technique wherein the patient receives information about their body through electrical pads.

The development of such robotic solutions and making them affordable for the Indian population is the major mission for Centre for Advanced Research and Excellence in Disability & Assistive Technology (CARE-DAT), which is a Centre of Excellence created under the aegis of the Indian Council of Medical Research. Srivastava spearheaded this initiative when it commenced as a collaboration between IIT Delhi and AIIMS. “While there have been significant advancements in assistive devices globally, many of these technologies are either unavailable or prohibitively expensive in India,”she says. “Therefore, we partnered with the biomedical engineering department of IIT Delhi to develop affordable robotic and assistive devices.”

Meanwhile, Husain underscores the significance of lowering the cost of stroke intervention in the country. He advocates for a substantial emphasis on research and development to decrease the cost of consumable materials―such as medical supplies, equipment and materials utilised during stroke intervention―that are currently priced high. “Without compromising on quality, if we can develop something that offers cost benefits to patients, it will be impactful in India,”he says, expressing hope that governments and the public will take crucial steps to support research efforts toward this goal.

how-mandeep-mann-saved-mandeep-singh-an-acute-leukaemia-patient-by-donating-his-stem-cells

Thu May 02 15:45:02 IST 2024

It was March 2016. Mandeep Mann―then a young management graduate-turned-IT professional, ambitious and enterprising, an adventure junkie and fitness freak―had just parked his car in the parking lot when he chanced upon a blood donation drive poster. Mann had always been an eager volunteer. At 36, he had donated at least 20 times, if not more.

As someone in a leadership role in a reputed IT firm, he had his plate full. Still, he took out time to donate blood yet again. Just as he was leaving from the blood donation centre for work, a volunteer from the DKMS-BMST Foundation India, an NGO focusing on fighting blood cancer, asked if he would like to consider donating his stem cells, too, “because that way you could save lives of those suffering from life-threatening blood disorders and cancer”. Of all the things she said, the word ‘cancer’ stuck with him. It had been a year since his wife had been diagnosed with breast cancer. They had met through common friends and Mann was besotted by her zest for life and charm. But now ever since the diagnosis, he could see her energy ebbing away. Though he had never heard of stem cells before nor had an idea of what he was in for, he knew he had to do anything that could potentially save someone from cancer’s grip. He signed up. They took his cheek swab sample, exactly the way it is done for Covid-19 testing. After an examination of his sample, Mann entered DKMS-BMST’s global registry of potential stem cell donors. This meant that he would be able to donate his healthy blood stem cells to a cancer patient whose blood cells were all infected. These healthy blood cells will then multiply and grow in a cancer patient’s body, thereby giving a fresh lease of life to someone who otherwise had no chance of survival.

Mann was given a donor ID card with a strangely unique number that ended with -007, making him feel like James Bond. In the global donor pool of the World Marrow Donor Association, a global database of volunteer donors, Mann was already a potential lifesaver-in-waiting. But, for Mann, it was just another act of kindness.

That night in 2016, as Mann went to bed with his heart full and mind at peace, several thousand kilometres away in Giana, a small village in Punjab’s Bhatinda, Mandeep Singh―eight years younger and a stranger to Mann―remained wide awake. Sleep did not come easy to him ever since blood cancer came into his life, eating into his body like an unforgiving termite bent on finishing him up.

But some seven years before that 2016 night, life was different for both Mandeeps. It was June 2009. Mann was in Bengaluru―his career was going great and relationship was blooming. He had just completed a year in marriage; weekdays he worked hard and weekends his wife and he would set out on getaways. In Giana, Singh was just 20―cheerful, well-built and athletic and excited about the possibilities life had to offer. Eldest of three siblings in a happy family that primarily depended on farming for a living, Singh dreamt of a career in khaki. A star kabaddi player in college, he had just aced his training rounds for police recruitment. To celebrate, he had planned a bike trip with friends. That’s when Singh was bogged down by a “sudden fever that refused to budge; it went on for months”.

At the time Singh’s total leukocyte count―the white blood cells count―was close to 3.5 lakh per microlitre; the normal range is between 4,500 to 11,000 per microlitre. Clearly, something was wrong. A battery of tests and a bone marrow biopsy revealed chronic myeloid leukaemia. CML is a type of blood cancer that can lead to the formation of immature or abnormal blood forming cells called cancer cells, which enter the bloodstream and multiply in an uncontrolled way, thereby driving out healthy cells. As a result, the blood can no longer perform its basic tasks, such as transporting oxygen and protecting the body from infection.

In many cases, with medicines like Imatinib (Glivec), which then cost Rs40,000 per strip (that would come to more than Rs1 lakh per month), the disease progresses slowly. But Singh would skip his dose, especially in the first two years, as he wasn’t told about the deadly nature of his disease. His doting father, Naib Singh, had kept it from him, thinking he would be devastated. It was only when Singh sneaked into his father’s room, switched on the call recording option on his father’s phone and heard the recorded conversation between his father and brother-in-law the next day that the severity of the situation dawned on Singh. He cried himself to sleep that night. “Until then, I had just thought it was any other ailment, which will heal in time,” says Singh in a telephonic conversation with THE WEEK. “I used to keep missing my dosages, despite the doctor’s strict warnings that I had to pop a pill every single day for lifetime. That’s why I quickly went downhill.”

But Naib was too protective of his son and did not want to see him lose heart. Those days, the family had seen a large number of people from their neighbourhood die of cancer, including children. His mind would keep going back to Punjab’s infamous cancer trains that would ferry patients from Bhatinda to the Acharya Tulsi Regional Cancer Treatment & Research Institute in Bikaner, Rajasthan, “hoping to get treated at a low cost or die trying”. Seeing his son board that train was Naib’s worst nightmare.

At the time, it was found that emissions of soot and fly ash from the three coal-based thermal power stations, rampant use of pesticides, high amounts of uranium seeping in borewells and polluted water used for growing rice crops and drinking had rendered villages of Punjab dangerous to live. “Researchers had made a shocking discovery of the presence of uranium in children way above safety limits,” writes Dr Sona Sharma, author of Mandeep Meets Mandeep, which chronicles the journey of two strangers who come together to forge a bond of a lifetime. “The place had become a boiling cauldron of dangerous chemicals, each more carcinogenic than the other.”

Cut to 2017. Life had been moving in a pattern for both the Mandeeps. Mann was building his startup and climbing up the ladder, whereas Singh was feeling better, both physically and mentally. He spent time with friends, had even tried his hand as an Uber driver in Chandigarh, had attended a friend’s wedding and was now back in his village to work on the farm. “My friends by then had moved out of the village for work; many had married,” recalls Singh. “Marriage was, of course, not on my wish-list at that time. I was only grateful to be alive with the morbid fear of cancer behind me.”

And then, cancer gave its cue once again―that insidious pain he had experienced the first time had returned to haunt him. “Just when life had begun to look brighter, I was being sucked into this black hole for a second time and this time I was exasperated and devoid of all hope,” recalls Singh. “It was depressing, especially since we had spent so much money already, had sold off our land, pulled through trying tests only to end up at square one.”

Until then Imatinib had prevented the increase of BCR-ABL1, the abnormal gene found in CML patients. But after a point the medicine no longer worked and the disease progressed, and he moved to the “accelerated phase”. That was the first time Singh was told about a stem cell transplant.

“By then Singh had crossed from stage 1 to stage 3 (acute) and there was no way he could have been cured without a bone marrow transplant,” says Dr Dinesh Bhurani, director, haemato-oncology and bone marrow transplant, Rajiv Gandhi Cancer Institute and Research Centre, New Delhi, who treated Singh in his later stages of cancer. “All his cells were infected and rogue. His body had to get a set of fresh blood with healthy cells and that too very fast because there was rapid deterioration.” Bhurani put Singh on chemotherapy and tablets and began the hunt for a suitable donor.

Usually, stem cell transplants are done to replace bone marrow cells that have been destroyed by cancer or chemo or radiation. In some cases where the transplant uses stem cells from another person, it can help treat the cancer by finding and killing cancer cells even as replenishing the bone marrow with healthy cells. That is what was essential in Singh’s case, and for that he needed a matching donor.

A suitable donor is the one who has a matching HLA type. HLAs (human leukocyte antigens) are protein markers found on the surface of most cells in our body, including white blood cells. They are markers which help the immune system in recognising its own body cells from foreign cells. So that means only those cells that have protein markers similar to the patient’s can be transferred, or else the immune system will reject them. So, if two people share the same HLA type, they are considered a match. Even in one’s own immediate family, the chances of finding a donor are one in four, say experts. Unfortunately, none of Singh’s close family―father, brother Jagdeep, sister Soma―was the right match. Now the only option was to look for a potential ‘stranger donor’ in stem cell registries. “At that time, I was staring death in the face,” says Singh. “I was so desperate that I was trying all sorts of alternative treatments, including ayurveda and blind faith.” He waited for a donor for three years. He got potential donors twice, but both backed out at the last minute.

“The problem in India is that people register voluntarily, but when the time comes to donate and actually help a patient, about 70 per cent refuse,” says Patrick Paul, CEO, DKMS-BMST Foundation India. “One of the most concerning aspects is that young people in this country, who are potential donors, are not able to make their own decisions and opt out of the process if their families say no.” The lack of awareness and ignorance of stem cell transplants and its impact have resulted in a minuscule number of people registering as stem cell donors. “Some absurd reasons include signing up for this might lead to infertility or the loss of an organ. But we try to educate and counsel people to be donors,” says Paul.

Globally, around 41 million people are registered as stem cell donors from multiple registries, while India’s contribution is only 6 lakh. DKMS alone has 12 million stem cell donors globally, with a little over one lakh from India. “And given that the probability of finding a match is very rare―one in a million―of the one lakh in India, only 110 people have actually gone ahead and donated stem cells,” says Aarohi Tripathy, public relations manager, DKMS-BMST Foundation India.

As per a research paper published last year in the International Journal of Clinical and Medical Education Research, Ajeet Kumar from the Centre for Genetic Disorders, Institute of Science, Benaras Hindu University, writes, “India’s annual incidence of CML ranged from 0.8 to 2.2 per one lakh people. This is the most frequent type of leukaemia in India, accounting for 30 per cent to 60 per cent of all leukaemia.” A lot of people who die of blood cancer in India are not even aware they had blood cancer, adds Paul. “Every five minutes, someone in India is diagnosed with blood cancer, and an estimated 70,000 people die every year because of blood cancer,” he says.

In her book, Sharma writes about a young CML patient dying after a donor backed out at the last minute. The child had been given excessive chemotherapy to prime his body to receive the stem cells. The body became so drained and vulnerable that he died within hours. Another case was of a little girl who had matched with multiple potential donors, but each one of them had backed out. “At times, a registered person refuses to go ahead with the donation unless they know the caste and religion of the patient,” says Tripathy. “This is specific to India. However, as a policy, we do not share details of either the patient or the donor.”

By now it was 2018-19. Mann was struggling with his wife’s metastatic cancer treatment with multiple rounds of chemo, and Singh had gone from being a bright young college student to a patient in his 30s with no sign of a normal future.

“Every day, for those three years, I prayed to God to somehow magically make that one person from any corner of the world appear in front of me, whose stem cells my body would accept and embrace wholeheartedly; someone who had been kind enough to register as a donor so that I could get a fresh lease of life,” says Singh. “I would be indebted to that person for my entire life.”

And then, ID number ‘-007’ serendipitously appeared. Mann was a 100 per cent match. Unlike now, one could not go ahead with a transplant with 50 per cent or 25 per cent match then. “It is sheer good luck and a blessing if a patient can find a 100 per cent match. And that too one from within the same country and in this case the same ancestry; [it] is quite magical,” says Sharma.

All transplant physicians and hospitals have been given a platform―Hap-E Search―wherein they just enter the HLA profile number of the patient to check for a suitable donor match. The physician then contacts the registry with the donor ID. A donor’s details are never revealed; he or she is only a number. Their names and other details are not given out ever or at least until two years post transplant if it is successful. That is how Mann remained Singh’s James Bond until the two met in 2023, four years post Singh’s transplant.

But in 2019, when Mann was contacted for the stem cell donation, he wasn’t quite sure. He already had too many things on his mind. But his “yes” was crucial for Singh, who had been struggling with CML for 10 years now. In time and after consulting his wife, Mann was in. He would not go back on his word. “We have got to spread kindness around, that’s what makes us human,” he had said then. “If I can be someone’s miracle, why not?”

Mann gave a sample for the pre-donation confirmatory test. After his reports were marked okay, he had to get G-CSF (granulocyte colony-stimulating factor) injections for five days. These would help in increasing the number of stem cells in his blood, which would, in turn, help Singh get sufficient quantity. Mann was told that there could be nausea, fatigue and headache post procedure. He was asked to refrain from alcohol, late-night partying, vigorous exercises and was advised to drink lots of fluids.

Early morning on December 27, 2019, Mann was shown into a comfortable room at the BMST centre in Bengaluru. His vital signs were tracked and sterile needles were inserted in both his arms. The blood would be drawn from one arm and it will pass through a small apparatus that would collect his stem cells and the rest will be routed back to the body via the needle in the other arm. The process―apheresis―is akin to the way in which platelets are collected for dengue patients. Three to four hours and two movies later, Mann was back home. Stem cells were collected from his blood and were given to the hospital for the transplant. Mann did not drink alcohol for two days after that. “I was feeling great,” he tells THE WEEK. “It was liberating really to know that you have that one divine set of cells inside your body that can bring a person back from the grasp of death. This one time I was really amazed at how science could trump death, too.” That night, he hung out with friends, with good food and music for company.

In Giana, Singh was counting days when the cells would reach him, akin to the excitement one has when one has placed an order online and impatiently waits for the delivery. Ever since he had received the news that his blood stem cell transplant could happen soon, he was thrilled “like a child”. That January of 2020, he had danced his heart out at his best friend’s wedding procession. “By then I hadn’t even received the news and healthy cells, but I had already begun to look at life with a refined perspective,” recalls Singh. “I did not take anything for granted anymore. Everyone and everything I had became so much more precious and pronounced now. It was a fantastic feeling.”

Prior to the transplant, Singh was informed that it did not give a 100 per cent guarantee of cure. He was given tablets and chemotherapy to kill all cancer cells. That quite drained him―he was now bald, nauseous, dizzy and tired. That day, Singh broke down as he saw lumps of hair fall off as he touched them. His heart sank. Until now, he had been hopeful, but in the condition he found himself that day, his confidence had been crushed.

Next day, a fresh set of stem cells were transplanted into his frail body. His body had no ability to fight off infections while the transplanted cells took root. If cancer didn’t kill them, an uncontrolled infection could. “But that was managed with medicines. The main problem was that Singh got the graft versus host disease, which is a systemic disorder that occurs when the graft's immune cells (that is Mann’s cells) recognise the host (Singh) as foreign and attack the recipient's healthy body cells,” explains Bhurani. “This meant his body was at war with the donor cells. In simple terms, Mann’s cells were not ready to accept Singh’s body as their own. The latter was covered with rashes. This is a life-threatening complication, but Singh sailed through with the help of Ponatinib, which took care of his infections, too.”

Within days, the new stem cells began producing healthy blood cells, and Singh began feeling better. He was asked to live in a “bubble” until declared fit to move. But the very next day, Singh was driving back to Giana with his sister and brother-in-law. His parents had arranged a prayer ceremony, “which was to be attended by the entire village as a way of expressing gratitude to the universe for finding him his ‘angel twin’ who had blessed him with a healthy life”.

“Many keep waiting for years in search of a matching donor,” says Bhurani. “I have seen so many of them die for the lack of funds to pay international stem cell registries that charge high rates, even when a donor is available and ready for a transplant.” In Singh’s case, DKMS charged Rs 5 lakh for the process. Add to that the transplant cost, which goes up to Rs20 lakh. Many cannot afford the procedure. In Singh’s case, the entire amount was paid by the family. “What worked for the two, which was found later, was that they unknowingly shared the same ancestry,” says Bhurani. “They are now genetic twins of sorts.”

Singh had not forgotten the registry rule―direct interaction between the donor and the patient was prohibited till two years after the patient’s recovery. He had been waiting desperately to meet his “god”. His wish was answered by the DKMS team―the two were to meet at a coffee shop in Bengaluru in February 2023. Singh had finally crossed the two-year mark, and could now safely call himself “cured”. He repeated the word to himself like a child, over and over again.

From as much as she had gathered from her past interactions, Tripathy says, “Both the men, I remember, were so different and yet similar in so many ways. Both were good-looking, tall Punjabis. Both were very warm, polite and easy-going. It was exciting to see how they would meet each other.”

At the café, Mann had taken the seat that faced the other way, so he did not see Singh arrive. When Singh, already teary-eyed but with sheer happiness, walked in, he tapped Mann on the shoulder and said, “Hi, I am Mandeep.” And Singh then immediately hugged him tight. “Thank you,” he added. Those were the only words spoken in that interaction. “What could I say? So much had been felt there was no room for words,” recalls Mann.

They didn’t need to spell it out; they knew they were bound for life―the two often meet whenever Mann visits Punjab to meet his sister in Jalandhar.

People who wish to register can visit https://www.dkms-bmst.org/get-involved/become-a-donor

dr-vandana-yadav-on-how-to-protect-your-skin-from-air-pollution

Sat Mar 30 15:19:09 IST 2024

Interview/ Dr Vandana Yadav, assistant professor, department of dermatology and venereology, Hind Institute of Medical Sciences, Lucknow

How does air pollution impact the skin?

Air pollutants can exist as solids, liquids, gases and particulate matter. These are absorbed directly through the skin into the subcutaneous tissue or via hair follicles and sweat/sebaceous glands. The skin, being the largest and outermost body organ, acts as a physical, chemical and immunological barrier against environmental factors. Whenever prolonged and repetitive exposure to environmental stressors exceeds the skin’s normal defensive potential, there is a disturbance in the skin barrier function, leading to the development of various skin diseases.

What pollutants impact the skin the most?

Exposure to ultraviolet radiation has been associated with extrinsic skin ageing and skin cancers. Cigarette smoke contributes to premature ageing and an increase in the incidence of psoriasis (which exhibits as scaly, inflamed skin), acne and skin cancers. It also causes allergic skin conditions such as atopic dermatitis and eczema (both display dry, itchy, inflamed skin). Polycyclic aromatic hydrocarbons (from the burning of coal, oil, gas, wood, garbage) are associated with extrinsic skin ageing, pigmentation, cancers and acneiform eruptions (manifest as small, raised, acne-like bumps on the face, scalp, chest and upper back).

Volatile organic compounds (human-made chemicals used and produced in the manufacture of paints, pharmaceuticals and refrigeration) have been associated with atopic dermatitis.

What is the mechanism for manifestation of these skin issues?

Air pollutants exert a harmful effect on the skin by increasing oxidative stress, which depletes the skin's antioxidant defence. (Antioxidants are manmade or natural substances that may prevent or delay some types of cell damage.) Free radicals and reactive oxygen species (an umbrella term for highly reactive chemicals) are generated that interact with the cell membranes and damage them. Reactive oxygen species also stimulate the release of other pro-inflammatory mediators, which results in the accumulation of neutrophils (a kind of white blood cells that are the body’s first line of defence) and other phagocytic (immune) cells that further generate free radicals, thereby resulting in a vicious cycle. Oxidative stress initiates complex biological processes resulting in genetic damage and other processes involved in cell growth and differentiation and in the degradation of the connective tissue of the dermis. Air pollutants induce severe alterations of the normal functions of lipids, DNA and/or proteins in the human skin via oxidative damage, leading to extrinsic skin ageing, inflammatory or allergic conditions such as contact dermatitis, atopic dermatitis, psoriasis, acne and skin cancer.

Is there a gender differential?

The different impacts on genders were mainly because of the difference in the level of exposure as more males did outdoor work. However as work culture changes, females and males appear to be at the same risk.

What are some protective strategies?

Strategies for personal protection against increasing air pollution include physical photoprotection by use of sunscreens; avoidance of areas with public smoking and around industries; usage of topical (applied to the body’s surface) antioxidants such as vitamin C and E in formulations along with sunscreen; and use of indoor air purifiers and ventilators. People with high occupational risk, such as traffic police and cleaning staff, should use masks while at work.

several-eye-conditions-like-conjunctivitis-are-directly-linked-to-air-pollution-dr-ketan-patel

Sat Mar 30 15:16:57 IST 2024

Interview/ Dr Ketan Patel, ophthalmologist, Bhailal Amin General Hospital, Vadodara

What are the air pollutants that cause the greatest harm to the eyes?

Air pollutants that pose the greatest harm to the eyes include carbon particles, particulate matter, nitrogen dioxide, sulphur dioxide and ozone. These pollutants can lead to the accumulation of particles in the eyes, leading to inflammation, redness, irritation, watering (epiphora) and chronic dryness.

What are some of the eye conditions that have a direct link to air pollution?

Several eye conditions are directly linked to air pollution. These include conjunctivitis, both allergic and non-allergic, as well as chronic dry eye syndrome. These problems can in turn exacerbate other eye problems like red eyes and photophobia (sensitivity to light).

Does pollution also impact eyesight?

Yes, pollution can impact eyesight, primarily through its effects on the tear film. The tear film is essential for maintaining a clear vision by lubricating the eyes and protecting the cornea. Disruption or instability of the tear film due to pollution-induced dry eye syndrome can result in visual disabilities such as photophobia in daylight and increased glare at night.

Could you share some tips for taking care of the eyes, given that pollution is omnipresent?

* Wear good protective eyewear, such as correctly fitting goggles, especially in bright sunlight and windy conditions.

* Use helmets while driving scooters and bikes to protect eyes from dust and pollutants.

* Use lubricating eye drops to alleviate dryness and irritation caused by pollution, in consultation with your doctor.

* Maintain overall health through proper nutrition and hydration to support eye function and build resilience against pollution.

Are certain people more prone to the ill effects of air pollution on eyes?

Certain demographic groups are more prone to the ill effects of air pollution on the eyes. These include older individuals who naturally have less tear film production, which is also an issue with menopausal women. Also at greater risk are individuals with specific dry eye disorders like Sjogren's syndrome (a disorder of the immune system) and thyrotoxicosis (abnormally high levels of circulating thyroid hormones) with exophthalmos, which is characterised by wide-open, bulging and protruding eyes.

dr-saurabh-mehrotra-on-how-air-pollution-impacts-mental-health

Sat Mar 30 15:15:00 IST 2024

Interview/ Saurabh Mehrotra, associate director, neurology and neurosciences, Medanta, Gurugram

Given that mental health is a continuum, how do you isolate pollution as a contributor to mental health challenges?

The World Health Organization has ranked air pollution as one of the major environmental health risks accounting for about 4.2 million premature deaths. The WHO guidelines implicate PM2.5, PM10, ozone, nitrogen dioxide, sulphur dioxide and carbon monoxide in poor air quality. The strongest evidence for adverse health is for PM2.5. These particles can reach the deepest parts of the lung, causing local and systemic inflammation and oxidative stress. They also find their way to the brain. All these are ultimately responsible for effects on physical and mental health.

What are the most common manifestations of mental health challenges caused by pollution?

Most of the world population breathes unsafe air. In our experience, we have seen how smog makes us feel depressed, anxious and irritable. This, although a superficial association, still conveys a point.

From research, there is emerging evidence that exposure to outdoor and indoor air pollutants may affect mental health and lead to neurocognitive disorders such as dementia. Outdoor air pollutants are risk factors for depression, anxiety, personality disorders and schizophrenia. Furthermore, there may be problems in concentration and cognitive function.

Indoor air pollution is also of great significance, since almost 90 per cent of our time is spent indoors, at work and home. Poor indoor environment may lead to fatigue and sick building syndrome, which comprises a host of physical and psychological symptoms. It also reduces work efficiency and leads to absenteeism. There are reports of brain fog, anxiety and depression related to indoor pollution. It must be emphasised that the findings are preliminary and future research will provide more information including causal mechanisms.

What about the effects of air pollution on pregnancy and newborns?

The effects of air pollution during pregnancy and on newborns are still being studied. Children exposed to poor indoor air quality in schools perform worse on math and reading comprehension tests. It is important to understand that half of adults with mental illness show symptoms by 11 years of age and 75 per cent do so by 24 years. Research suggests that psychotic experiences were more common among adolescents with the highest level of annual exposure to nitrogen dioxide and PM2.5. There is also evidence of association with depression. Reviews show an association of exposure to PM2.5 and PM10 to depression, anxiety, bipolar disorder, psychosis and suicide in adults.

What is the wider issue of air pollution and its impact on mental health that we must be addressing?

The bigger topic of climate change and mental health needs to be addressed. Extreme weather events are becoming common and faced by all of us. This is leading to job loss, forcing migration, harming social cohesion, depleting resources, and having serious mental health consequences. A new vocabulary has developed to describe such effects. Ecological grief and eco-anxiety are terms describing the sense of loss or anxiety people feel related to climate change.

Solastalgia is a term coined to capture the nostalgia we can feel for a traditional way of life or childhood landscape destroyed by environmental change. People also describe emotional burnout and despair when we fail to make progress in improving such issues.

The effects on mental health are a consequence of being in a situation like this, as well as the deeper effects on the brain because of the pollutants or toxins or stress.

crucial-to-recognise-that-tackling-air-pollution-is-an-emergency-dr-gopi-chand-khilnani

Sat Mar 30 15:13:03 IST 2024

Interview/ Dr Gopi Chand Khilnani, chairman, PSRI Institute of Pulmonology, Sleep Medicine and Critical Care, Delhi

When we talk of air pollution, the foremost impact that comes to mind is lung health. Is this because the pathways are better understood?

Air pollution has a multitude of impacts on our health, many of which are not fully understood. It occurs when the air becomes contaminated with harmful substances (for example, carbon monoxide), which originate from various sources, creating a complex mixture that affects us in different ways. Primarily, air pollutants enter our bodies through the lungs, leading to significant impact on lung health. The damage caused to the lungs is well documented, with conditions like Chronic Obstructive Pulmonary Disease (COPD) being particularly noticeable. In fact, air pollution is responsible for half of all COPD cases in India. Additionally, it contributes to the occurrence of lung cancer, with 40 per cent of cases in non-smokers in Delhi attributed to pollution.

Children, in particular, are vulnerable to the effects of air pollution. In Delhi, one-third of children suffer from asthma, indicating a significant impact on respiratory health. Studies have shown a clear correlation between increased air pollution levels and a rise in emergency hospital admissions for asthma, COPD and heart attacks, with rates increasing by as much as 25 per cent.

Lung health itself is not an isolated problem. Does it lead to other health concerns, too?

In healthy people, we have seen that it causes sore throat, cough, feverish feeling, breathlessness and wheezing. In people who have underlying lung disease like asthma or COPD, it necessitates severe nebulisation, admission to emergency and ICU care. But the lung is not the only organ which is affected because ultra-fine particulate matter enter the bloodstream through the lung and go to all the organs of the body—heart, brain, urinary system—and thus affect them all. Other health concerns are hypertension heart disease, strokes, dementia and a variety of cancers. There has been good research in this field, both in India and abroad. And, it has been shown that the life expectancy of human beings is reduced depending on the extent of pollution.

What are the key areas of research that must be undertaken with regards to air pollution and its impact beyond lung health?

A study by Dr Jim Berlin provides clear evidence that air pollution is adversely affecting the health and lung development of children in Delhi. The findings revealed that children in Delhi had lower lung function compared to their counterparts elsewhere. It emphasises the urgent need for policymakers to take decisive action and implement effective policies to control air pollution. Responsibility for addressing this issue lies not only with the administration and policymakers but also with every citizen, as the sources of air pollution, such as construction, road dust, burning of fossil fuels, and waste materials, are widespread and controllable. With approximately 9,000 industrial units contributing to pollution in Delhi NCR alone, urgent measures need to be taken to mitigate these sources of pollution. It is crucial to recognise that tackling air pollution is an emergency that requires immediate action to safeguard the health and well-being of our children.

In a paper, you extrapolate results from a study in the US (see main story). Could you elaborate a little more on the observation?

A study conducted in Chicago and published in October 2023 revealed some worries about the impact of air pollution on life expectancy in India. It showed that the average lifespan of an Indian citizen is reduced by 5.3 years due to air pollution, with the lifespan of people born in Delhi being shortened by 11.9 years. This is alarming news.

However, the study also shed light on a positive aspect: the case of China. China took significant measures to control air pollution starting in 2013, and by 2021, their average lifespan had increased by 2.2 years. This indicates that improving air quality can lead to longer lifespan.

During Covid-19, another interesting observation was made. In northern Italy, where air pollution levels were higher, the death rate due to Covid-19 was three times higher compared to southern Italy, where air pollution was lower.

Similar patterns were observed in Germany, where areas with higher levels of nitric oxide, exceeding 100 parts per million, saw increased mortality rates compared to regions with lower nitric oxide levels.

These findings highlight the direct link between air pollution and mortality rates, emphasising the importance of addressing air quality concerns, especially for the health and well-being of children.

air-pollution-s-effects-go-beyond-the-lungs-impacting-fertility-and-mental-health-besides-your-eyes-and-skin

Sat Mar 30 15:10:40 IST 2024

Every breath you take, depending on where you take it, is poisonous in varying degrees.

Five years after the country launched its National Clean Air Programme, it is distressing to note that even in cities that have seen the greatest improvement in Air Quality Index (AQI), the air still falls in the ‘moderately polluted’ category. The National AQI describes this bracket as one that “may cause breathing discomfort to people with lung disease such as asthma, and discomfort to people with heart disease, children and older adults”.

Air pollution, despite its ascendancy in public consciousness, remains a partially understood challenge. No, it is not limited to the winter months. No, it does not assume monstrous proportions only in north India. No, it is not an urban curse. And a big no for believing that it only affects lung health.

One of the most alarming impacts of air pollution is on fertility—the ability to conceive a child. This is an effect that transcends individuals and generations, for it can and will lead to disastrous demographic consequences.

A decline in fertility and a global increase in life expectancy equal a rapidly ageing world population, thus precipitating a series of problems such as labour shortage and heightened financial pressure. While multiple factors like more women getting education and entering the workforce, social acceptance of late marriage, overall health condition, body weight, nutrition and choice play a role in fertility, the challenge is to tackle avoidable factors, including pollution, for those who want to have children.

“Fertility is influenced by a complex interplay of genetic, physiological, lifestyle and environmental factors,” said Dr Preeti Rastogi, director, obstetrics and gynaecology at Medanta Hospital, Gurugram. “Pollution represents just one among numerous potential contributors…. The challenge lies in the variability of pollution exposure levels, which depends on factors such as geographic location, occupation, lifestyle choices and socioeconomic status.” Thus, the impact of pollution on fertility may not be immediately apparent, but would manifest over a long term or after prolonged exposure.

Depending on which data source and age group one looks at, the prevalence of infertility in India ranges from almost 4 per cent to, according to some sources, almost four times that. Data from the National Family Health Survey shows that the prevalence of primary infertility at national and regional levels decreased from 1992-93 to 2005-06, but secondary infertility rose dramatically—from 19.5 per cent in 1992-93 to 28.6 per cent in 2015-16. Moreover, this increase was far greater in the southern states, and the lowest in the northeast. (Primary infertility means that there has been no pregnancy ever, while its secondary form refers to at least one earlier pregnancy.)

To understand the still nascent comprehension of the impact of air pollution on fertility, let us turn to a relatively better researched linkage. Smoking is a known enemy, with research converging around the finding that women smokers are three times more likely to experience a delay in getting pregnant than non-smokers. Even passive smoking is harmful as it reduces a woman’s ovarian reserve (the fixed number of eggs a woman has in her ovaries) and can also damage cilia inside the fallopian tube. Cilia are small, slender hair-like structures in the cells, which when damaged in the fallopian tube will interfere with its capacity to transport the egg and/or embryo into the uterus. In men, smoking may reduce sperm quantity and quality. Smoking produces nitrogen oxides, hydrocarbons and carbon monoxide— the same gases that are the major components of air pollution.

And why does this pollution matter? That’s because pollutants in the air act as endocrine disruptors. This is a term for chemicals or a mix of them that interfere in the way in which hormones work.

Hormones are the body’s message carriers—moving through the blood to tell various organs what to do. Air pollutants are pesky things with varied impacts that range from tricking the body to think that they are the real hormones, to blocking natural hormones from doing their jobs, to impacting the body’s sensitivity and response to hormones.

“Air pollutants disrupt the normal operation of the hormonal system and lead to hormonal imbalances,” said Dr Rakhi Goyal, consultant and centre head, Birla Fertility and IVF, Chandigarh. “The presence of heavy metals in particulate air poses a toxic threat to ovarian eggs. These pollutants can induce oxidative stress and inflammation. Alterations in the vascular or uterine environment as well as the direct transmission of harmful chemicals through the placenta to the early-stage embryo can contribute to miscarriages. Pollutants may also inflict damage to DNA or genes, thereby impacting the quality of both eggs and sperm.”

Oxidative stress is an imbalance between free radicals, which are oxygen-containing molecules with an uneven number of electrons, and antioxidants. The latter are compounds that inhibit oxidation as they can donate electrons to free radicals so that they become less reactive. While oxidation is a normal and necessary process (for example, when it happens in immune cells, they are prepped to combat virus and bacteria), an imbalance gives free radicals the leeway to damage fatty tissue, DNA and proteins, which, in turn, leads to the onset or progression of multiple diseases.

And why does inflammation matter? In part, because it can affect the uterus, cervix and placenta—vital to pregnancy and childbirth.

The components in polluted air also cause havoc with the hypothalamic-pituitary-gonadal axis, which plays a critical part in the development and regulation of a number of the body’s systems and functions, including reproduction. Negative impacts on the trio lead to harmful changes in sexual maturity and function.

Dr Shilpa Agrawal, consultant, high-risk pregnancy and foetal medicine specialist at Jaslok Hospital and Research Centre, Mumbai, said that the impacts of air pollution on reproductive health were vast, including endocrine abnormalities and dangers to implantation (the embedding of a fertilised egg in the uterus). “The severity of the effects depends on the type of pollutants, exposure time and specific locations,” she said.

These variables pose research challenges. Air pollution, in the form of, say, vehicular emissions, is carried far beyond its site of occurrence and so are its impacts. Challenges to fertility kick in much before a couple tries to conceive.

Dr Nirmala Chandrashekar, senior consultant, obstetrics and gynaecology, BGS Gleneagles Global Hospital, Kengeri, Bengaluru, pointed to two villains—styrene and xylene. Styrene is a colourless, flammable liquid, with a sweet odour, widely used to make plastics and rubber that go into manufacturing a number of products like automobile parts, food containers and printing cartridges. Despite its use in food containers, the impact on food is minimal, but when inhaled, its negative impacts increase dramatically. We breathe it indoors from vapours released by photocopiers and tobacco smoke, for instance. Xylene—another colourless, sweet-smelling liquid or gas, naturally occurring in petroleum, coal and wood tar—is on the long list of hazardous emissions by vehicles.

“Studies have revealed a correlation between air pollution and menstrual cycle abnormalities in women exposed to solvents like styrene and xylene,” said Chandrashekar. “This exposure is associated with decreased blood flow during periods and can contribute to hormonal disruptions, affecting the number of antral follicles (immature eggs), which are crucial for egg development.”

While experts are in agreement on the link between rising pollution and falling fertility, they emphasise the need for studies to measure the exact impact. Such a study would encompass the examination of both natural and assisted conceptions over an extended period, correlating their outcomes with environmental exposure. It would require data from air quality monitoring stations situated across geographies, the population’s exposure based on their place of residence and proximity to major traffic roadways and industries.

Anecdotal evidence though is piling up. Goyal has seen enough in her practice to label it “a concerning trend”, with even young couples experiencing poor semen quality or a diminished ovarian reserve. Dr Preethika Shetty, consultant, obstetrics and gynaecology at Motherhood Hospital, Kharadi, Pune, underscored the need for experts to turn the lens outwards. “Whenever a couple visits with infertility (problems), the medical aspect is focused on intrinsic factors such as sperm count, egg count and tubal factor,” she said. “External factors such as pollution, stress or even external medicine consumption are less talked about and focused on.”

While an understanding of the exact pathway of how pollution adversely affects human fertility is still emerging, one widely quoted study of available literature, published in the Chinese Journal of Public Health (2021) noted that impacts occur at various stages of egg development, fertilised egg formation and implantation, clinical conception, in vitro fertilisation and embryo transfer, abortion and preterm labour.

A major challenge, said Agrawal, stemmed from the fact that there are several forms of pollution that an individual is exposed to, thus pinning down one becomes difficult. “We do see a higher number of foetal anomalies in mothers from lower socioeconomic background, which might be due to their increased exposure to various pollutants (in drinking water and food),” she said.

There is another lag in scientific studies on the link between fertility and air pollution. Dr Satyanarayana Mysore, head of department and consultant, pulmonology at Manipal Hospital, Bengaluru, said, “There are more studies on pollution and males in the form of decreased sperm counts, reduced sperm mobility, and alterations in sperm morphology. The evidence on male reproductive parameters appears to be stronger for the simple reason that there is a large volume of literature on this subject as opposed to female fertility.”

Among males, as among females, the causes are the same, though manifestations differ. Mysore lists a few of these, like hormone disruption, which leads to anti-androgenic activity, that is the blocking or suppression of the male sex hormones such as testosterone. This causes reduced spermatogenesis (formation of sperm). The germ cells, which are the mother cells for reproductive cells, are also affected and decrease in number.

The second is the induction of reactive oxygen species (highly reactive chemicals). “When particulate matter count crosses 300-400, which is very common in some of the metro cities, this reactive oxygen species—a by-product of metabolism due to pollution—can lead to programmed cell death, especially of the sexual cells, ovaries and gonads,” said Mysore.

The alteration of cell DNA caused by the ability of pollutants to bind with cells, leading to mutation and cell death, is another fallout. The fourth is epigenetic modification, wherein the expression of genes is changed. To explain the last one, Mysore cited studies that found that women working in certain industries, such as petrochemical, for more than seven years are at risk of disturbance in their menstrual cycle.

Dr Ritu Hinduja, fertility consultant, Nova IVF Fertility, Mumbai, listed some steps to tone down the impact of pollution. “One effective way is to focus on a diet rich in antioxidants... such as berries, spinach and nuts,” she said. “Another important strategy is to reduce exposure to environmental toxins by opting for organic products whenever possible. Pesticides and chemicals found in non-organic food items have been linked to hormonal imbalances and reduced fertility.”

These are especially vital for high-risk pregnancies. “Harmful chemicals present in polluted air can penetrate the placenta and affect the developing foetus, leading to adverse health outcomes for the mother and baby,” said Hinduja, citing the example of preeclampsia (a mixture of complications in pregnancy that includes high blood pressure, headache, nausea). Masks, deep breathing, air purifiers, yoga, avoiding the outdoors during peak pollution are all suggested for combating air pollution in general.

Dr Nisha Bhatnagar, medical director of Infinite Fertility, New Delhi, said that the ill effects of pollution on the mother extend to the foetus and thus to the newborn. “They are vulnerable to neurodevelopmental abnormalities, including learning disabilities and IQ decline, as a result of their developing systems and young age,” she said. “Exposure to high levels of air pollution may even affect a child’s cognitive abilities and subsequently impact academic and professional prospects. In addition, their present and future mental health might be profoundly impacted.”

Once again, lack of scientific studies makes it challenging to establish definite linkages. Dr Gopi Chand Khilnani, chairman of the Delhi-based Pushpawati Singhania Hospital and Research Institute of Pulmonary, Critical Care and Sleep Medicine, referred to a 2023 study on the long-term impact of fine particulate matter and academic performance conducted in North Carolina. The study found that even PM2.5 of 10ug/cu mm impacted academic performance in mathematics and reading. Khilnani points out that in Delhi the average PM2.5 was 126.5 in 2022. (1ug is 1/1,000 of a milligram), and thus its ill effects would be more pervasive.

PM2.5 refers to inhalable particles with a diameter of less than 2.5 micrometres. They are visible only under a microscope. Besides dirt, dust, smoke from known offenders such as vehicles and factories, they also include pet dander, dust mites, bacteria, dust from construction and demolition sites.

That leads us to the allied but larger question of how air pollution, among a vast array of environmental exposures, impacts mental health. Dr Neerja Aggarwal, a psychologist with Emoneeds, a digital platform that helps individuals with chronic mental health issues, said that even brief exposure to air pollution, particularly PM2.5, is associated with increased risks of mental disorders such as depression and schizophrenia, particularly in children as their brains and behaviour are still developing.

“Common manifestations of mental health challenges due to air pollution include depression, anxiety, cognitive impairment and behavioural disorders,” she said. “These symptoms may differ slightly from those caused by other types of pollution due to the specific mechanisms involved. Air pollutants, particularly PM2.5, directly enter the bloodstream through the respiratory system, affecting the central nervous system and brain function. This can lead to neuroinflammation, oxidative stress and disruption of neurotransmitter pathways, contributing to mental health issues.” (Neurotransmitters are chemical messengers that help cells communicate with each other—for instance, telling the body when to sleep and when to wake up.)

The loop between air pollution, fertility and its impact on children and overall mental health is vicious. While children might experience health challenges that begin at a foetal stage, they are also growing up in a world where they are bombarded with information on various climate emergencies, in large part induced by pollution.

“In current times, it is perfectly normal to worry about… critical issues plaguing us and our planet,” said Alok Kulkarni, senior interventional neuropsychiatrist at the Manas Institute of Mental Health, Hubli. “Young people around the world are particularly aware of these pressing changes.”

This greater awareness affects psychological wellbeing. A 2021 global survey of 10,000 children in 10 countries showed widespread climate anxiety and dissatisfaction with government responses. Another study revealed that climate anxiety could be so disabling that it could impact daily functioning and manifest in feelings of sadness, anxiety, anger, helplessness and guilt.

Kulkarni listed a number of physical manifestations this can take, including feeling breathless, sweaty, fidgety and experiencing vague headaches. “Young people may also feel that other stakeholders, particularly those in the government, aren’t doing enough with respect to climate change,” he said. “(They) may think of not having children or may ponder over the point of going to school or having a career. This continuous swirl of anxious thoughts affects one’s sleep, motivation, energy levels and the ability to concentrate.”

These pressures only worsen with time. A 2024 study titled ‘Estimating the role of air quality improvements in the decline of suicide rates in China’ looks at the evidence that suggests that air pollution may play a role in increasing suicide risk by altering brain function. China accounts for 16 per cent of global suicides. The authors of the study caution that while it is difficult to quantify the contribution of air pollution to suicides, statistical models suggest that an increase in PM2.5 levels raises suicide rates by around 25 per cent. “This effect occurs without delay, consistent with neurobiological evidence that PM2.5 influences emotional regulation and impulsive-aggressive behaviour,” read the study. “Effects are sex and age specific; women over 65 exhibit significantly higher vulnerability…. Our findings uncover a causal link between particulate pollution and suicide, adding urgency to calls for pollution control policies across the globe.”

India stands only below China in the number of suicides reported annually, but research once again remains sketchy. While we grapple with these multilayered complexities of the impact of air pollution from before we are born till we take our last breath, there can be no time too soon to tackle the issue.

Air, after all, should be the mark of life, not of despair and death.

medical-practitioners-who-have-turned-their-passions-into-an-alternative-profession

Mon Feb 26 17:32:47 IST 2024

In a world that goes round and is round, we are often boxed in, based on colour, caste, religion, gender, occupation and more.

Appearances, they say, can be deceptive. But that’s not the case with Dr Sanjay Meriya. He looks and speaks more like a hip-hop artiste than a doctor. He is both though. There are more like Sanjay―an ENT specialist who will check on you even as he cracks a joke during his standup act; a dentist-singer who will appreciate your sweet voice but not your sweet tooth; a nuclear medicine specialist who discovers new stories and talent for films as much as he detects diseases; a doctor couple who married medicine with their passion for fashion; and a dermatologist whose acting, be it on stage or screen, is anything but skin-deep.

Meet the doctors who are defying conventions and challenging stereotypes to carve out their unique space and identity.

Laughter is the best medicine

What follows a hilarious standup comedy act? Applause, cheer, flowers, requests for selfies and autographs? Dr Jagadish Chaturvedi, an ENT specialist-cum-standup comic gets all that and more―his fans come bearing medical reports. Curious, Chaturvedi once asked a man why he had showed up at the comedy club, instead of the outpatient department, with his CT scan report. Without batting an eyelid, the man quipped, “At the clinic, it is 01,000 for your consultation. Here, it is 250 bucks, plus I get two beers free.”

Such unexpected humour is gold for Chaturvedi, 39, from Bengaluru, and he treasures it in his notes. “I refine these thoughts through repetition, starting from one-on-one conversations and progressing to small shows,”he says. “I evaluate the audience's reactions, pinpointing moments of laughter and then fine-tune the sentences until they consistently evoke a humorous response.”

Chaturvedi’s tryst with art began in theatre. His father, who loved to act, would take him to workshops at Bangalore Little Theatre. “As a child artiste, I performed with some big names in the Kannada theatre circuit like Prema Karanth,”he recalls. Even during his MBBS days at Sri Siddhartha Medical College in Tumakuru, he found time for theatre. But he had to give it up during postgraduation as he could barely keep up with the studies, clinical practice and Bengaluru’s traffic. As he skipped rehearsals, which could go on for three to four months, directors and production houses shunned him. That is when Chaturvedi started thinking about a form that would give him the freedom to practise both medicine and art.

Standup comedy was picking up then, and his experience in writing theatre monologues came in handy. He became a standup comic in 2015. “In contrast to theatre monologues, where the character's perspective takes precedence over audience reactions, comedy relies heavily on immediate audience feedback,”he explains.

As he refined his comic timing, he improvised when it came to medicine as well. When he was in St. John’s Medical College and posted in a rural area to screen for throat cancer, he had trouble using a mirror-like tool to see the vocal cords. “It was a skill issue for me because many people are able to do that very well,”says Chaturvedi. To overcome his shortcoming, he thought of attaching a digital camera to an endoscope, which eventually developed into a low-cost ear, nose and throat imaging device. The device landed him in MIT Technology Review’s Innovators Under 35 list in 2016.

Since then, Chaturvedi has been part of teams that developed around 20 innovative medical devices, of which nine are already in the market. One of them is HiiiH-Tex Pocket ENT Wireless Endoscope, a portable device his team developed for paediatricians, general practitioners and family physicians for patient examination; it is now being used in Africa, the Middle East and India. Chaturvedi says that thanks to the device, he checks on his patients even while travelling for shows. “I have a clinic which has some junior doctors who use this device [to send inputs to me],”he says. “So, I am constantly in touch with patients, and I am able to give them advice and consultation anytime, even while going for shows.”

Screening, at a lab and theatre near you

Dr Ajith Joy, a nuclear medicine consultant, has a finger in almost every pie. The pie that easily catches the eye is films―he has produced four. His latest―Aattam (2023)―won the Grand Jury Award at the Indian Film Festival of Los Angeles. That same year, he introduced a unique initiative under his firm, Dr. Joy's Mamografia, offering women a decade of breast cancer screening for a minimal one-time payment. That’s not all. A serial entrepreneur, he has invested time and money in Netrasemi, a microchip firm; Aramis, an Al-based medical imaging and analysis software firm; DDNMRC group of nuclear medicine and therapy centres; and multiple other businesses in the segments of real estate and farm plantations. “I am a nuclear medicine physician by qualification and profession, but prior to that, I am a second-generation businessman,”he says.

In 1983, Joy’s father, the late K. Joy Joseph, introduced the concept of private pathology labs in Kerala through his Doctors Diagnostic Centre Private Limited. “Its research division―Doctor's Diagnostic Research Centre (DDRC)―which was formed in 1990 later on expanded to become Kerala's largest diagnostic network,”says Joy, who adds that he has been involved with the lab business since class 10.

Joy, 47, studied medicine at Al-Ameen Medical College in Karnataka. Post MBBS, he got a diploma in radioimmunoassay techniques from the Bhabha Atomic Research Centre in Mumbai. He chose molecular medicine and nuclear imaging with targeted therapeutics as his specialisation and completed his postgraduation from Radiation Medicine Centre, Tata Memorial Hospital, in Mumbai in 2004. Why this specialisation, we ask. “When we examine the root cause of any disease, it inevitably leads us to the cell―that means it is nuclear,”he says. “Delving into a subject that goes so deeply into the core, where interventions can be made, treatments administered, modifications enacted or even complete annihilation achieved, is truly fascinating.”

In 2003, even before completing his postgraduation, Joy founded his nuclear medicine therapy centre―DDNMRC―with the aim of providing affordable nuclear medicine cancer treatment. In the next two decades, Joy introduced numerous advanced technologies in nuclear medicine to Kerala, his home state, which has one of the highest cancer incidence rates in India. This includes establishing the state's first medical cyclotron facility under his firm, Molecular Cyclotrons, which now supplies various F-18 radiopharmaceuticals, which are used in PET scans, to over 24 facilities. The F-18 isotopes have a half-life of just 109.8 minutes, making it nearly impossible to transport them from distant locations. Previously, cancer patients in Kerala had to rely on PET scans from other states, making the process expensive and time-consuming. Now, Joy says they “are not only providing [radiopharmaceuticals] to Kerala but also to southern Tamil Nadu”.

In 2021, SRL Diagnostics (later rebranded as Agilus Diagnostics), which had been a joint venture partner with DDRC since 2010, completed the acquisition of DDRC, thus becoming the largest pathology laboratory chain in the country. When the discussion about the acquisition was on, Joy began contemplating his next move. “And, one of the ideas that emerged was arts, music and entertainment,”he says. That led him to establish his film production house, Joy Productions, in 2021. And, the first thing he did was bring in post-production infrastructure, including a high-quality colour grading studio and a full-fledged VFX and graphics studio. He also introduced several high-tech production equipment to Kerala.

Joy believes that “a movie is actually made in pre-production and post-production”, and he has brought in corporate-like professionalism in film production. The four films he produced were directed by debutant filmmakers. He has a system for discovering new talent and stories. “But at the end of the day, I definitely have to hear the story before agreeing to take up a project,”he says, recalling that he heard the story of his biggest blockbuster, Mukundan Unni Associates (2022), while sitting in a casino in New Orleans during a conference. Additionally, he supports independent musicians with his Joy Music. His own taste in music is diverse―from English classical and western cowboy tunes to Malayalam melodies, eastern classical and even rock.

Not just music, Joy has dabbled in painting as well. He rekindled his childhood passion during the Covid-19 lockdown when he found himself stuck in Abu Dhabi for many months. “I never had time to paint since my [medical] college days,”he says. “But during the Covid phase, I completed some 46 paintings.”

He is in India for only 10 days a month. “Rest of the time, I am probably hunting technology across the globe or based in Dubai,”he says.

All work and plays

What connects dermatology and theatre? If you ask Bengaluru-based dermatologist Dr Anil Abraham, he will offer a philosophical answer, highlighting the profound “body-mind”connection celebrated by both disciplines. “A seemingly minor issue like acne on the face, a white patch on the arm, or hair loss in a young man can deeply affect the psyche,”he explains. “Often, the skin reflects what lies beneath the surface. The pallor of anaemia, the early yellowing of jaundice, the fungal infections of undetected diabetes, or the under-eye bags from disturbed sleep―all these are telltale signs of lifestyle and internal conflicts. The same principle applies to theatre and comedy. While the surface message may appear light, the underlying thought often prompts reflection. We may laugh at the surface humour, yet the deeper message may be overlooked. Seemingly silly comedy can convey profound ideas.”

With more than 30 years of experience, Abraham, 60, is one of the most sought-after medical professionals in the country for hair-loss treatment. After his fellowship at Stanford University, he underwent training under Eugene Farber, a dermatologist celebrated for groundbreaking research on psoriasis and allergies. Abraham, formerly the head of the dermatology department at St. John’s Medical College, now runs his own institution―Abrahams Skin & Hair Clinic.

A distinguished speaker at international conferences and with contributions to international publications, Abraham did not let the universal ‘log kya kahenge (what will people say)’view alter his viewpoint. “Most people pigeonhole doctors into a narrow mould, expecting them to be serious and uninteresting individuals with minimal artistic interests or inclinations,”he says. “These outdated stereotypes need to be consigned to the past. The obstacle lies within the mind, and overcoming it is also a mental feat.”

Abraham's foray into theatre began during his school days. Even before turning 15, he had already graced the stage in productions such as Luigi Pirandello's Six Characters in Search of an Author. Over the years, he was part of numerous iconic plays, including an ART production of Shakespeare’s Midsummer Night’s Dream and Arjun Sajnani’s rendition of Girish Karnad’s Tughlaq. Under the tutelage of stalwarts like Prakash Belawadi, Kirtana Kumar, Ashish Sengupta and Arundhati Raja, Abraham honed his theatrical skills. Additionally, he ventured into playwriting and directing. He skilfully integrated social and medical themes into his comic play Gentlemen. His background in theatre helped him create comic content for social media. Collaborating with renowned comedians such as Papa CJ and Danish Sait, he showcased his versatility on stage and screen. During the Covid lockdown, his comedic video series, 'Ungle’s Simbil Solutions', went viral. Furthermore, Abraham made memorable cameo appearances in films like Rocketry: The Nambi Effect (2022).

“I choose to find time to do everything I want to do,”he says. “I do my rehearsals outside my work hours. When I am a doctor attending to my patients, I am fully present in that moment, giving it my complete attention. Similarly, when I am on stage performing a role or bringing laughter through improv comedy or standup, I am entirely committed to that role. It is not a split focus; it is 100 per cent dedication every time.”

Spin doctor of a different kind

Dr Sanjay Meriya’s hands have healed people; those very hands have also ‘scratched’out new tunes, for he is a turntablist, too. Sanjay, 34, is an acclaimed hip-hop artiste, known by his stage name ‘The SpinDoctor’.

Sanjay no longer actively practices medicine. However, in an exclusive revelation to THE WEEK, he shares that he is the primary physician to many prominent figures in the Indian hip-hop scene. “Everybody in my circle in the music scene will call me… like at midnight and all,”he says. “These big artistes… they will call me and they will be like, ‘Yo, I'm having this issue, that issue. Can you help me out?’ So yeah, they trust my opinion.”

Sanjay says that he was a studious child and his childhood dream was to be an astronaut, not a hip-hop artiste or a doctor. Medicine was his mother’s dream―“My mother once had an open-heart surgery; she wanted me to pursue medicine and help people,”he says.

Sanjay started listening to hip-hop while preparing for medicine. He cracked the entrance exam and joined the Topiwala National Medical College in Mumbai in 2007. “The medical college days were hectic and that is when I thought about picking up a hobby,”he says. The Indian rap scene was still in its nascent stage, and Sanjay found a place in Mumbai’s Gully Gang led by rapper DIVINE. By the time he graduated, Sanjay emerged as a respected battle DJ. “I used to do a good gig,”he recalls. “People respected me for my skills; back then I was the only turntablist in the Mumbai hip-hop scene.”

Following his graduation, Sanjay worked at a rural hospital for a year. After that, he started his own clinic in Borivali in northwest Mumbai. However, managing his clinical practice and his travels for music proved to be quite difficult, and a year later, he decided to focus just on music.

This phase saw him playing alongside hip-hop legends like Tyga and DJ Stretch Armstrong. “But then my musical career grew exponentially,”he says. “I had plenty of shows in India and abroad.”

And then Covid came and Sanjay willingly returned to medicine. He applied for medical volunteering after spotting a Brihanmumbai Municipal Corporation ad. In April 2020, he started working as a medical volunteer in one of Mumbai’s worst-hit suburbs―Andheri East. Sanjay worked tirelessly, screening hundreds of patients. He used his innate humour and musical skills to entertain fellow doctors and others who had been working alongside him. As the Covid waves subsided, Sanjay switched his focus back to hip-hop. “But if I feel that society needs my service as a doctor, I will definitely come back, and put my medical degree to some use,”he says.

There is an interesting story behind his stage name. “In the beginning, my stage name was DJ Sanjay; then for some time it was DJ Doctor,”says Sanjay. “One night in 2016, my mentor called me randomly and told me: ‘I don't like your name―DJ Doctor…from now onwards you are The SpinDoctor.’Then he hung up. It was weird but special. And, I felt the new name was really good.”

During his early days as a DJ, Sanjay would “flex”his medical degree. “In the DJing world, I used to tell people that I am a doctor, too, to impress them; similarly in the medical world, I used to tell people that I am a DJ, too,”he says. “But now I am at the point of my life where I try to keep them separate.”

Both his worlds have taught him life lessons. “My exposure to the medical field made me understand that one needs to respect life―you need to take care of your health and body and be disciplined,”he says. “Music on the other hand taught me to explore life and avoid getting stuck in a cycle.”

Dressing, not just wounds

September 1, 2011. That date is etched in Dr Vibhuti Dhaundiyal’s mind. That’s the day she first met her batchmate, later friend and now husband Dr Rishi Roy. Ludhiana lad Roy and Noida native Dhaundiyal met at the Muzaffarnagar Medical College in Bahadarpur, Uttar Pradesh. Roy was chatty and outgoing, Dhaundiyal his opposite. But a beautiful friendship began, which eventually saw them become partners not just in business but also in life.

Today, Roy is an orthopaedic surgeon, while Dhaundiyal is a clinical cosmetologist. But they effectively take forward their shared passion for fashion, which they found accidentally during their college days. It all started when the duo, to save some money, designed a dress for Vibhuti for a college event. The “budget”piece, however, attracted a lot of attention and soon they started getting orders from friends and others in college.

With an initial investment of Rs2 lakh, they launched their brand―Rishi & Vibhuti―with three karigars (artisans) in 2015. Their first collection, The Empress of Light, was showcased at a trunk show. Today, their brand has a full workshop with master tailors, karigars, a finishing team, design team and fashion interns.

“Juggling both worlds can be challenging, but our dedication to both medicine and fashion keeps us on our toes,”says Dhaundiyal. “It is about prioritising and efficient time management, ensuring neither profession compromises the other.”

The doctor duo, both 30, finds patrons of their fashion among patients, too. “It is a delightful intersection. Once, a design inspiration struck during a medical mission, resulting in a collection that echoed the vibrant culture we experienced,”recalls Roy.

The couple’s skills complement each other―Roy’s knack for production and Dhaundiyal’s creative flair form the perfect synergy for a fashion venture. “Rishi brings designs to life while I infuse narratives,”explains Dhaundiyal. “We brainstorm ideas, ensuring each piece tells a story. It is a dynamic process where creativity flows, marrying aesthetics with meaningful themes.”

The brand concentrates on affordable luxury. Unusual cuts and combinations, pant saris, indie fusion and muted ivory ensembles have been the brand’s signature. The couple dreams of showcasing their collection at international fashion weeks.

Roy is a trained Kathak dancer, whereas Dhaundiyal is a singer and ukulele player. Roy says that the diverse passions breathe life into their designs. “Kathak influences fluid silhouettes, cooking sparks vibrant colour choices, ukulele tunes inspire patterns, and singing sets the rhythm,”he explains. “It is an eclectic mix that defines our brand's unique identity.”

But diverse passions may lead to creative differences, too. “Creative differences are inevitable,”says Dhaundiyal. “We embrace them, valuing each other's perspective. Communication is key; we find common ground by respecting our individual strengths, often discovering that the best ideas emerge from a blend of our creative energies.”

Melody and medicine

Legendary singer S.P. Balasubrahmanyam (SPB) once likened her voice to that of S. Janaki. In 2020, when 'Chuttu Chuttu', a song from the comedy drama Raambo 2, became the first Kannada song to surpass 100 million views on YouTube, composer Arjun Janya expressed his gratitude to Dr Shamitha Malnad with a box of sweets. He credited her vocals as a driving force behind the song's tremendous success. Sweet as Janya’s gesture was, that box of sweets may not have been ideal, considering Malnad is a dentist.

Malnad, who has won the state and Filmfare awards for playback singing, runs a clinic with a college friend in Bengaluru. Both dentistry and playback singing entered her life unexpectedly. “My mother used to sing and teach me for school-level competitions,”she recounts, noting the absence of structured classical music training during childhood. “My exposure to music at that time was primarily for competitions or events. I was fully focused on my studies and aspired to become a gynaecologist. My parents, particularly my father, shared this aspiration.”

During her high school years, Malnad received training from Chikmari Gowda, a graded singer at Akashavani, for competitions. It was Gowda who paved the way for her career as a playback singer in 1996. When a group approached Gowda to release a devotional album, he suggested Malnad’s name. The album, titled Kanive Kabbali, gained immense popularity, bringing further opportunities in devotional songs during her teenage years.

However, Malnad faced a setback in her entrance examinations. “My rank was a little low, and I didn't secure admission for MBBS. So, I pursued dentistry instead,”she says. “But it turned out to be a blessing in disguise because, compared to MBBS, dentistry offered a less hectic schedule and allowed me a bit more time for music.”During this period, Malnad also began learning Hindustani classical music under the tutelage of the late Pandit Sheshadri Gawai.

Malnad, 46, made her debut in film playback singing in 2002. “Music director Gurukiran offered me my first song,”she recalls. “He didn't reveal that he intended to use my voice for the final track, so as not to make me nervous. It wasn't until a month later, after the cassette was released, that I discovered my voice had been retained for the final track.”Despite the challenges of balancing her studies with her career in playback singing, Malnad persevered. Soon after finishing her studies, she promptly began her medical practice in Bengaluru.

Meanwhile, her musical career soared as she lent her voice to over 4,000 albums across languages. She collaborated with renowned music directors in the Kannada film industry and sang duets with iconic singers such as SPB, Shankar Mahadevan and Udit Narayan.

Malnad reveals that within the music industry, there is a group of individuals that seeks her advice not only for dental issues but also for other matters. “Then there is another group that mistakenly assumes I hold a PhD,”she says. The singer-dentist emphasises the importance of the word “practice”in both dentistry and music. “Consistent practice and staying updated are crucial in both fields,”she says. “Because styles evolve, systems change and equipment advances.”

craze-for-weight-loss-drugs-not-justified

Sat Jan 27 14:52:47 IST 2024

Ahead of her daughter’s wedding, a woman in Australia took semaglutide to lose weight. She lost her life. The drug became widely popular on social media after billionaire entrepreneur Elon Musk posted about how he lost around 10kg after using the molecule. The drug, which belongs to a class of medications called glucagon-like peptide-1 (GLP-1) agonists, works by sending signals to the brain that you have achieved satiety even if you actually have not.

GLP-1 is a hormone that is produced in the small intestine. It stimulates insulin secretion (which allows cells to take up glucose) and inhibits glucagon secretion (which prevents more glucose from going to the bloodstream) to lower blood sugar levels. GLP-1 also slows stomach emptying, meaning less glucose from food is released into the bloodstream. GLP-1 increases satiety after eating, which contributes to its weight loss property. Most GLP-1 are taken by injection. The exception is rybelsus, which is the world's only oral GLP-1 pill. Common side effects are nausea, vomiting and diarrhoea.

But how did the woman die? The drug caused a rare complication called ileus, which is paralysis of the intestine. This caused waste to accumulate in her body by curbing her defecation and urination processes. And she took the drug mainly for weight loss, not for diabetes that was the original indication. If she was diabetic, perhaps this side effect would not have occurred.

So, clinicians and patients must be careful when using GLP-1 agonists for the first time. If a patient is diabetic with a body mass index of more than 30, there is no harm in trying the drug. But for a non-diabetic patient with a BMI of less than 28, I would not recommend it straightaway.

GLP-1 agonists were not developed as weight loss drugs. They were developed to overcome insulin resistance by suppressing the appetite, whereby they reduce post prandial sugars. Patients who were injecting 100 units of insulin can reduce their insulin dose by more than 50 per cent when GLP-1 is used concomitantly for at least two months. So, for diabetes, this is a wonder drug. All diabetologists prefer lower insulin intake in obese patients as insulin causes weight gain. Patient using GLP-1 would lose more than 7kg in two months―weight loss that overcomes insulin resistance.

At present, research is ongoing to see if GLP-1 can reverse (NASH) non-alcoholic steatohepatitis if used in early stages. The initial data seems encouraging. However, in late stages, the effect may not be that promising. So, the key is: when fatty liver is first detected and the BMI is above 30, with impaired fasting glucose values, GLP-1 may be used. If we actually reverse NASH, the progression to cirrhosis maybe prevented.

In spite of this, if you ask me if the craze for weight loss drugs is justified, the answer is no. Because an individual must always try to maintain optimum weight through healthy eating and exercise. Only if it fails must external molecules like GLP-1 be used and that too if it is medically indicated. Because each allopathic molecule has its side effects as we saw in the case above.

Still, GLP-1 agonists remain the most promising anti-obesity drugs approved by FDA till date, and, if early trial results are anything to go by, the management of diabetes and obesity is set to undergo a paradigm shift in the coming months as weight reduction can reduce risk of hypertension and cardiovascular diseases in a big way.

Joseph is specialist, internal medicine and diabetology, Zulekha hospitals, Dubai.

bmi-alone-cannot-be-used-to-measure-obesity

Sat Jan 27 14:47:41 IST 2024

Is obesity related to body mass index (BMI) alone? No. Experts believe this might not be the right approach. BMI is just a quick way to determine whether you are in a healthy weight bracket, but it does not provide the complete picture of a person’s health. By feeding in your height and weight, the numerous free BMI calculators available online tell you whether you are underweight, normal, overweight or obese.

Last August, the American Medical Association (AMA) discouraged doctors from relying on BMI alone to diagnose obesity. Researchers at Yale Medicine argue that BMI was developed based on the bodies of non-Hispanic white men; it may not provide accurate results for those who fall in other categories of sex, ethnicity, and race. This is why doctors insist that BMI should be used as a key factor, along with other parameters like blood pressure, cholesterol, and glucose level, to understand a person's overall health.

Obesity in India has reached a state where almost one in three people have some amount of excess fat in the body. Especially around the waist, which is often a precursor for chronic conditions like diabetes, heart and kidney disease, sleep apnea, and liver cirrhosis. Because of our genetics, even at a lower BMI, Indians carry excess fat, says noted endocrinologist Dr Shashank Shah.

BMI is essentially a number calculated by dividing your weight in kilograms with the square of your height in meters. As per the Centers for Disease Control and Prevention (CDC), BMI "is not intended to diagnose excess body fat or weight-related illnesses, such as high blood pressure, elevated cholesterol, and type 2 diabetes," all of which play a crucial role in weight management.

Recently, a paper by researchers at JAPI (Journal of the Association of Physicians of India) argued that “body mass index and waist circumference were both recommended for better identification of people at risk of obesity-related comorbidities than either of them alone.” The researchers added that the diagnosis and management of obesity should also consider a patient's psychology. The Edmonton Obesity Staging System (EOSS) was suggested as being most suitable for the assessment of obesity. A multidisciplinary team was considered invaluable for treating patients with obesity. The use of once-a-week semaglutide (2.4 mg) via the subcutaneous route was suggested as the first-choice anti-obesity treatment when pharmacotherapy is deemed necessary.

“An algorithm considering all these aspects was proposed,” stated the paper. “BMI assessment is one of the most common measures of obesity. However, it does not exactly measure/correlate with the total content of body fat; this is because the total content of body fat in two individuals having the same BMI could differ by a factor of two. Also, BMI cutoff values lack sensitivity in identifying adiposity (percentage body fat) and BMI evaluation is insufficient for identifying individuals with excess body fat percentage in 50 per cent of the cases.”

The paper noted that the BMI is between 25 and 32 in those who are otherwise not graded as severely obese, but the impact of obesity on the body in the form of joint disease, spine and body pain, inability to move, breathlessness, and inter-personal relationship problems are so severe that they deserve more aggressive treatment before they progress into obesity. This is not measured by BMI. EOSS acknowledges all three (metabolic, functional, and mental) aspects of obesity, and thereby offers a more well-rounded diagnostic and management system for it.

"Cardiologists and practitioners do approve this new system of grading obesity, which will help in its treatment,” says Shah. “It will initiate preventive action and timely therapy, and give scope for newer drugs to treat obesity in time.”

new-vibrating-pill-may-help-treat-obesity

Sat Jan 27 14:44:24 IST 2024

Researchers at MIT have developed an ingestible capsule that vibrates in the stomach and tricks the brain into thinking the stomach is full, potentially helping people lose weight.

About 39 per cent of the world’s population is considered to be obese. Pharmacological treatments that are currently available have a lot of side effects and are not affordable for most people.

Developed by Dr Shriya Srinivasan, now an assistant professor at Harvard University, and colleagues, the pill is powered by a small silver oxide battery. Once it reaches the stomach, gastric acids dissolve a gelatinous membrane that covers the capsule which completes the electronic circuit and activates the vibrating motor. Vibrations from the capsule activate the same stretch receptors (sensory structures that detect stretching in muscles and organs) that perceive when the stomach is expanded, mimicking a sense of fullness.

These receptors signal the brain to release insulin and other hormones that aid digestion and provide a feeling of fullness and limit eating. It also reduces levels of the hunger-promoting hormone ghrelin.

When animals were given this pill 20 minutes before eating, hormones that signal satiety were released and they ate about 40 per cent less than usual. They also gained weight more slowly during periods when they were treated with the vibrating pill.

The current version of the pill vibrates for about 30 minutes and passes harmlessly through the digestive tract within four or five days. Researchers are studying the possibility of keeping the pill in the stomach longer and turning the vibrations on and off wirelessly as needed. They are also exploring ways to facilitate human clinical trials.

The findings were published in Science Advances.

with-obesity-on-the-rise-and-the-increasing-desire-to-look-fit-and-good-the-weight-loss-industry-in-india-is-booming

Sat Jan 27 16:50:00 IST 2024

When she was in college, Kalpana Ganesh never considered herself overweight. Though she was not lean―at 5’4”, she weighed around 70kg―weight was never an issue as she believed in body positivity. She began piling on kilos gradually and unmindfully, thanks to a thriving hostel life, outside food and late night binge sessions with friends. At 25, she left her hometown of Jabalpur to start her career as a communications professional in Mumbai. Her daily schedule went for a toss, and thereafter, the kilos never came down, necessitating “a zillion paid interventions”.

Now, in her 40s, Ganesh has already spent Rs3 lakh to Rs5 lakh to lose weight. This includes a two-year gym membership, costing around Rs50,000, and an additional Rs18,000 for another six months at a different time. She also spent around a lakh on 10 injections to reduce abdominal fat and Rs30,000 in a quarterly diet programme. And yet, she weighs 115kg. Not that she didn’t shed any kilos. Six months ago, she weighed 124kg, which brought with it full-blown type 2 diabetes. “Losing weight is an expensive proposition now,” quips Ganesh.

Soni Ramani would agree. She is emotionally invested in Narayan Dham in Pune, a nature retreat, which she visits at least once a year for at least 20 days. It costs Rs8,000 per day. Ramani, who teaches differently abled children in a south Mumbai school, swears by the transformation she has felt in the last three years. Once, she was at the retreat for an entire month, during the summer vacation. She now weighs 78kg, down from 90kg. She subscribes to the retreat's extensive programme that involves “trekking, colonic irrigation or enemas, yoga and more”.

As per a report by IMARC, a market research company, the size of the weight management market in India touched Rs1.72 lakh crore in 2022. It is expected to grow to Rs3.15 lakh crore by 2028. This is true across categories, from beverages, food and dietary supplements to fitness equipment and apps and services that include health clubs, medical consultation and procedures. The weight loss or anti-obesity drugs market, consisting pills, fluids and injectibles, which is used in cases of grade 3 obesity, has doubled since 2022, feeding into a demand caused by the sheer rise in the number of obese people in India.

More than half the world's population will be overweight or obese by 2035 unless urgent action is taken to curb the growing epidemic of excess weight, warns a report by the World Obesity Federation. Currently, 38 per cent of the world population―2.6 billion people―is overweight or obese. If current trends continue, the number of people who are clinically obese is expected to rise to more than 4 billion in 12 years. In India, the rate of annual increase of adult obesity is “very high" at 5.2 per cent, while that of child obesity is also at 9.1 per cent. A land that was notorious for malnutrition decades ago is now a land of obesity. The National Family Health Survey-5 (NFHS-5) data from 2019-2021 reveals 33.2 per cent of urban women and 29.8 per cent of urban men (in the age group of 15-49 years) are overweight or obese.

As per Goldman Sachs Research, the global market for anti-obesity medications reached Rs49,000 crore on an annualised basis in 2023; it is expected to reach Rs8.31 lakh crore by 2030. As the market for anti-obesity drugs in India grows rapidly, pharmaceutical majors are competing to enter the market with weight loss drugs. Drugs such as Wegovy (for weight loss) and Ozempic (for diabetes but also used for obesity) have been approved by the US Food and Drug Administration, but are not approved for sale in India. These drugs lead to weight loss by way of an active ingredient―semaglutide―which regulates the appetite and makes one feel full after eating by triggering the glucagon-like peptide-1 (GLP-1) hormone in the small intestine. Novo Nordisk, which launched the semaglutide drug through their brand Ozempic, reportedly said that they are currently engaged in building an obesity portfolio in India. Dr Reddy’s, too, was given approval in September 2023 to proceed with bioequivalence study for semaglutide injection.

The launch of semaglutide (Rybelsus, the oral form of Ozempic) in January 2022 was a game changer, says Dr Manoj Jain, bariatric surgeon at Kokilaben Dhirubhai Ambani hospital, Mumbai. “None of these is approved (for obesity) yet, so whatever drugs people are using are over the counter or through black marketing via Singapore,” he says. “The demand for these is very high here in India. A single strip costs Rs15,000. Hence, it is for those who have loads of money to splurge and want shortcuts to weight loss. As of now, the drugs are only used by endocrinologists for diabetes control, but people are using it for obesity, too.”

Ajay Yadav, a drug distributor based in Mumbai's Andheri, tells THE WEEK that he does a business of close to Rs4.5 crore per month by selling Rybelsus in Mumbai. “The demand is very high, so much so that hardly any stock remains,” he says. “Ozempic and Wegovy are all imported. Starting from 3mg, it goes to 7mg in the next month, and if someone needs a higher dose, then it goes to 14 mg. It costs Rs9,000 for 3mg per month, Rs10,000 for 7mg and Rs11,000 for 14mg.”

And then there is the nutrition and supplements market in India, which is expected to grow from around Rs64,000 crore in 2023 to Rs1.37 lakh crore in 2030, as per research firm Insights10. Marketing professional Devendra Sali, a resident of Thane, paid for “nutritional supplements in the form of churna or powder” from Bengaluru-based Greengold Life. He had two bottles of the Greengold supplements and a year later bought protein powder from a Jaipur-based company. “The reason I opt for these things is that it is difficult for someone like me who is constantly on the go to exercise, and hence these supplements provide quick-fixes for some quick weight loss,” he says. “I spent nearly Rs40,000 on these.”

More and more people are opting for bariatric surgeries, too. According to a report by Global Data, around 40,000 weight management surgeries were performed in India in 2022. Of these, sleeve gastrectomy―a laparoscopic incision in which 80 per cent of the stomach is removed, leaving a tube-shaped stomach about the size and shape of a banana―was the most performed. “Given that we now have insurance that covers these surgeries, it is not only the rich who opt for these,” says Jain. “Also, these surgeries have been proven to be safe, with mortality of just one per cent. While it is essential that those over 32.5 BMI undergo surgery, loads of people in the overweight category, too, opt for surgery. But what we do instead is insert the gastric balloon via endoscopy, which acts like a satiety centre. It must be removed after six months. We now have capsules, too, which, if swallowed, blow up inside. Just a single capsule costs close to Rs2.5 lakh and the market is very much there.”

According to Dr Ramen Goel, a bariatric surgeon with Mumbai's Wockhardt hospital, people started opting for surgeries post pandemic. “During Covid, people realised how diabetes and obesity together make for the most deadly combination, so they have become more health conscious,” he says. “We now have about 30-50 consultations in a week and four to five surgeries a week, including gastric bypass surgery and sleeve gastrectomies.” Post gastric bypass, the stomach becomes smaller and you feel full with less food. It is a surgery that creates a small pouch to restrict food intake and bypasses a segment of the small intestine. Goel says that most patients who come to him are looking at weight loss either because they have co-morbidities or they are conscious about preventing the occurrence of co-morbidities.

Covid-19 also saw an increase in teenage obesity. “During Covid, we saw an average of 20kg increase in weight among teens in one year during Covid,” says Dr Varsha Gorey, senior clinical dietician with Apollo hospitals in Navi Mumbai. “This has fuelled a sharp increase in the desire for weight management and weight loss.”

Dr Ramesh Shah, a Mumbai-based family physician, says that it is a well-established fact that Indians, as a race, are more prone to weight gain. “Yet, weight gain is not taken seriously in our country until it becomes a serious problem,” he says. “It has now started to look like everyone wants to lose weight. Weight loss has become the new obsession. The sad part is that there is a difference between weight management and weight loss.”

Almost six months after delivering her first child, Shikha Agarwal, 38, from Mumbai still finds herself slipping into depression. It has little to do with postpartum depression and more to do with her inability to come to terms with her post-pregnancy body―she gained 12kg during pregnancy. But she is not one to give up or give in and has turned to social media for inspiration and motivation. Among the dozens of ‘fit-fluencers’ she follows on social media, she has been surprisingly been motivated by the weight loss journey of Anshula Kapoor, sister of actor Arjun Kapoor. Anshula posted her then and now pictures, when she once weighed 90kg to now 60kg. In an AMA (ask me anything) on Instagram, Anshula shared her meal and fitness plans in full detail. Agarwal could relate to Anshula easily and instantly, as she wasn’t someone boasting of a svelte or toned body but who just wanted to be fit while embracing her body type. And so began Agarwal's journey―she now wears a fitness watch to remind her about her daily runs, has a three-month membership with a calorie counting startup that provides diet meals to her doorstep for Rs12,000 a month, participates in an online yoga session twice a week, and vents out every evening to a friend.

But there is also an unhealthy obsession to look fit, even among the very young. In Pune, 16-year-old twins Siddhi and Riddhi Singh, who will soon be appearing for their Class 10 board exams, are more worried about piling on calories than about the upcoming geometry paper in the school's prelims. Their mother Sarita makes it a point to give the duo full fat milk with almond powder mixed in ghee and honey every day so as to help improve concentration and keep them full. But the girls refuse it, saying they need to maintain their look, else they will be “fat-shamed in school”. And so, they have replaced the milk with a cup of black coffee and aloo parathas during breakfast with yogurt and muesli. “Is this their age to even think about weight loss? But it is so ingrained in our culture now that even children are getting influenced by this growing obsession to look lean and slender,” says Sarita. “They are more bothered about their weight, than I am for mine.” Sarita is overweight by 20kg and has recently joined a walking club that has women from the neighbourhood coming together for brisk walks early in the morning.

In Delhi, Mohini Khurana is contemplating popping the weight loss pill and purchasing an ayurvedic oil recommended by her friend. Khurana's friend was obese and underwent surgery; her weight came down from 109kg to 75kg. Her friend has “since been on pills and oils to assist in weight loss,” says Khurana.

This desire to have fit bodies, the association of lean and slender with fit and healthy and the fear, paranoia and constant anxiety about contracting lifestyle diseases have reached unprecedented levels during Covid, say experts. According to Anamika Banerji, food and drink analyst, Mintel Reports India, 42 per cent of Indians, especially those in metro cities, associate maintaining their preferred body weight with a healthy lifestyle. This suggests that weight management is an important aspect of wellbeing for consumers. “During the pandemic, limited mobility, the closure of gyms and parks, coupled with emotional eating, made weight management challenging for consumers,” says Banerji. However, Mintel’s research shows that consumers continue to struggle post pandemic. In September 2022, 70 per cent of Indians agreed that it was more difficult to manage their weight now than it was before the pandemic. This may be attributed to increased stress and limited availability of time for physical activity. Additionally, 78 per cent agreed that it was difficult to know who to trust for weight management advice. The report also stated that more than a third of Indian consumers are interested in functional food and drink or supplements that aid in weight loss.

No wonder that low-carb diet has turned into a mini industry in India. Hyderabad hosted the country’s first low-carb diet conference in October 2023. The American Academy of Family Physicians states that low-carb diets can improve blood pressure and blood sugar levels and aid weight control in comparison to DASH (dietary approaches to stop hypertension) diets. In India, the low-carb and high-fat diet has gained traction in the last four years, with the keto diet forming a huge chunk (Rs30 crore) of the larger healthy food market (Rs2,000 crore).

The healthy snacks market is also growing at a fast rate. Moreover, startups like Bajo Foods recently raised Rs16 crore towards its mission to “reduce the number of carbohydrates that India consumes to 50 per cent from 85 per cent”. CEO of Bajo Foods Sudarshan Gangrade spoke about the unprecedented rise in the demand for food that aids in weight loss. “Bajo Foods provides low-carb food products like keto packaged food with a range from atta to cookies, mixtures, namkeens, and chocolates,” he says. Anindita Sampath, chief executive of Yoga Bar, which makes healthy muesli, protein bars, energy bars, peanut butters and gluten-free oats, is bullish on India's rapidly rising nutrition market. The Bengaluru-based startup is due to be acquired by ITC.

Additionally, plant-based meats make meat alternatives valuable from the perspective of maintaining a healthy body weight, as they are lower in fat and devoid of cholesterol while being high in protein. As per Mintel Reports India’s Plant-based Meat Alternatives, 2023, shared with THE WEEK, the need to maintain a healthy weight is the top reason for consumption, which was cited by 50 per cent of Indians who have eaten plant-based meat. The growing interest is evident, with celebrity couples like Riteish and Genelia Deshmukh launching Imagine Meats and Virat Kohli and Anushka Sharma funding Blue Tribe, another plant-based meat company. The global plant-based food market is expected to reach Rs13.46 lakh crore by 2030, up from Rs2.44 lakh crore in 2020, according to a joint report by Plant Based Foods Industry Association and EY India. And, India's market for plant-based meat is expected to go from Rs332 crore to Rs4157 crore in the next few years, as per Assocham report. Take BBQ Jack, which is actually jackfruit impersonating as meat; it was one of the items in India's largest shipment of plant-based meat sent to the US in 2023 by Wakao Foods.

Another area that is growing at a rapid rate is the health care-based apps market. As per the India Healthcare Apps Market Report 2021, the apps market was valued at Rs4,341 crore in 2020 and is estimated to reach Rs33,789 crore by 2026. According to Accurize Market Research, India’s fitness and nutrition app market will surpass Rs1.41 lakh crore by 2030. This pertains to apps such as Run Keeper, Fitbit, GoQuii, which guide you on your weight loss journey. This is precisely what Amrapalli Gondave, 33, wanted when she subscribed to a fitness app, free for the first three months. She wanted to see if it could help her “look and feel good”. From morning workouts to food portions to regular reminders for sipping water, it was constantly “active and alert”. “The app was like my mother,” she says. “It would nudge me into eating on time and eating right, to taking my walks every day without fail, to ensuring I was sleeping early at night. This is exactly what I needed.” Three months later, she signed up for the annual membership (Rs6,500). The World Economic Forum published an article recently where it stated that there was a 46 per cent increase in downloads of health and fitness apps all across the world and that India registered the highest number of downloads. The report mentioned there were 58 million new active users in the country.

“A very big influence comes from Bollywood celebrities who hold a big sway in the country and when they promote 'look good, feel good,' that's half the job done,” says Gorey. “Today, in the Instagram culture, looking good has taken top priority and that can happen majorly when one feels good from within, that is when one is in their best shape health-wise. And with leading celebrities like Varun Dhawan, Vicky Kaushal, Sanya Malhotra or Kiara Advani posting their daily workout pictures, it is motivation like no other to get straight to the gym. This humongous weight loss industry―right from physical workouts to nutrition to mental health and wellbeing―is only going to skyrocket in the years to come and India is gearing up for it.”

a-growing-tribe-of-indians-is-giving-up-the-fast-life-slow-living

Sat Dec 30 11:28:27 IST 2023

In the beginning, our trek to Urvi Earth Centre in Vattavada, Kerala, is poetic, as all treks initially are. As we trudge a mud path that cuts through the forest, we ooh and aah at the waterfalls and the pristine meadows. The sky is rimmed deep copper, as though it is rusting at the edge. Slowly the path grows treacherous and our breathing grows laboured. As dusk gathers, the land assumes a dishevelled look. We realise we are walking deeper into the forest. Overhead, the wheeling birds turn into silhouettes and the darkness grows clamorous with insect calls.

It is with much relief that we welcome the sight of Bodhi, Urvi’s founder. He expresses no surprise at seeing two mud-splattered ragamuffins waiting by the stony track―suitcase in hand, forlorn expressions in place―and wordlessly leads us the rest of the way to the holistic nature and art retreat centre.

In his flowing pants, shepherd’s staff and hair pulled into a tight bun, Bodhi could have been a Biblical prophet sent to save lost souls, which we might very well have been. And we are not the only ones, either. There are others: an engineer from Thiruvananthapuram, a photographer from Wayanad, an artist from Bengaluru, a single mother who works at ISRO…. We are all there to soak in the charm of Urvi and its founder. Languidly clustered around a fire, hugging ourselves as the night grows chilly, we talk about our lives and our aspirations. Over pancakes served on steel plates, each of us tells why we are there. And that is when something strikes us: everyone who comes to Urvi is a seeker. They are not just there for the stunning beauty of the land or for the camping experience. They are there to fill a void within themselves. They are there to find meaning.

“I am attracted more to the person than the place,” says one of them. “There is a stillness about Bodhi that is appealing.”

We know what she means. Bodhi, 25, truly looks as though he might have the answer to what writer Douglas Adams called “Life, the Universe and Everything”. He came alone to Vattavada in December 2021 and lived in a tent for several weeks while he scouted the area and, with the help of a few villagers, built Urvi’s main structure. Nearly two months later, he held a volunteers’ festival to recruit others. Soon, a core team was formed that helped him with the management, design, and marketing of the centre, consisting of Tejaswi Dantuluri, Nivya Dileep, Vipin E.K., Thejus Suresh, Anushree Warrier, Nishad Ali, Rahul Janardhanan and Mitha Rehna.

There were many obstacles. Initially, Bodhi came at the peak of winter without proper warm clothes. He spent two nights shivering with fever, with no one to help. Just before they were to inaugurate the centre in February, there was a forest fire. The whole hill caught fire, and Urvi was hemmed in by it. Luckily, Bodhi, along with a few others, was able to put it out before the centre burnt down. Today, Urvi functions as a sustainable and spiritual community centre that offers camping, art, and meditation workshops.

“I was studying engineering when it struck me how society only functions on the foundation of money,” says Bodhi, who credits his mother for starting him on this spiritual journey. “Don’t misunderstand me, I am not against money. Only against how everything revolves around it. Everything in life is now controlled by the market. It makes you feel insecure, like you are not enough, so that you keep wanting more. So I thought, let us form a community that uses the market rather than be used by it. The objective of Urvi is to transform people emotionally, spiritually, and physically.”

They define the concept of slow living as a counterculture to the fast-paced life. As Dantuluri, who helped set up Urvi, says, “The market has an inherent nature of speed, because it is an industrial model. You want to work more and earn more, and for that you cannot afford to be slow. So, in the process, people lose control over their lives.” It is against this that Bodhi and his team at Urvi offer an antidote: happiness from within and not without. They were the first slow warriors we met.

As early as 1982, Larry Dossey, an American physician, coined the term “time sickness”, or the feeling that “time is getting away, that there is not enough of it, and that you must pedal faster and faster to keep up”. Since then, we have all fallen victim to it. From fast food chains to unbridled consumerism to multitasking to lightning speed internet, we are living in a world that is accelerating at full throttle. In November, it was reported that China had launched the fastest internet in the world, capable of transmitting 1.2 terabits of data per second, which meant that it could download an HD film 150 times in under a second. The global fast food market reached $672 billion in 2022, and is expected to grow at 4.91 per cent per year. McDonalds, the world’s largest fast food chain, announced this month its plan to open 10,000 new stores globally by 2027 in what it says will be its fastest period of growth. It also announced a partnership with Google to automate restaurants using artificial intelligence. In a bid to save time and earn more, overworking and multitasking are the new norm. According to the Global Wage Report 2020-2021, after Gambia, Mongolia, Maldives and Qatar, India has the longest working hours in the world, with an average of 48 hours a week.

The human brain is hardwired for speed, which has evolutionary origins, says Dr Alok Kulkarni, mental wellness expert and senior consultant psychiatrist at Manas Institute of Mental Health, Hubli. “In the evolutionary scheme of things, humans have been primed for movement. We have traditionally been hunter-gatherers. Keeping a constant vigil to fend off attacks from wild animals was an intuitive and protective mechanism. This required the ‘fight or flight’ response. [The brain chemicals] epinephrine and norepinephrine regulate the sympathetic nervous system, which plays a pivotal role in this fight or flight response.”

However, he says that slowing down your life can, in some ways, produce changes in the brain. “In today’s fast-paced world, where we are bombarded by sensory overstimulation, slowing down can be a novel experience,” he says. “Any experience can produce neuroplastic changes.”

Slowing down your life is not a new concept. As Carl Honore writes in his book, In Praise of Slow, some of the greatest people in the world were slow thinkers. Charles Darwin described himself as one. Albert Einstein was famous for spending ages staring into space in his office at Princeton University. In the stories of Arthur Conan Doyle, Sherlock Holmes weighs up the evidence from crime scenes by entering a quasi-meditative state, “with a dreamy vacant expression in his eyes”.

The difference today is that in the age of social media, the slow warriors have become united. They have turned into a community with a structure and a philosophy, an ecosystem and a code of conduct. If earlier, our forefathers put a premium on self-sacrifice, the slow warriors today put one on self-affirmation and self-worth. They are looking inward instead of outward for a sense of peace and contentment. As Honore writes, “That sense that something is missing from our lives underpins the global yearning for slowness.”

In this age of ‘instant’―instant gratification, instant loans, instant noodles―there are many things tying these slow warriors together: a minimalistic lifestyle, the pre-eminence of spirituality and meditation, a focus on sustainability, a determination to live in the present, a search for meaning and the pursuit of their passion.

“Slow living to me means letting go and not being bothered by what others think,” says Abhinav Saxena, 38, an independent musician who plays soulful rock and blues in Mumbai. Making money is not a priority for him. Learning vipassana in an ashram at the age of 20 convinced him that we can live with the bare minimum. “I am happy to live with what I have,” he says. “I like to earn local and buy less. In short, slow living means taking time to smell the roses, eating well, meditating, and taking care of your mental health.”

Today, I put my hand on a patch of moss and tried to listen.

silence at first,

and then

bird call,

crickets,

village roosters crowing in the distance.

the sound of my breath

in and out,

and in and out

and then,

I hear,

you and me, child

we are not so different

Today human, tomorrow moss.

-Writer and regenerative gardener Neha Sumitran, on Instagram

Neha Sumitran, 37, moved to Pethuparai in Tamil Nadu from Mumbai with her husband four-and-a-half years ago. She spends her days gardening, cooking, and writing. In Mumbai, Sumitran worked as a journalist for Nat Geo Traveller, covering food and travel.

“I had a full-time job,” she says. “I was out the door within an hour of waking up, and in my office till 6pm. Then I would come back home, make myself dinner and go to bed. A lot of time went in just commuting from home to work and back.”

After a point, Sumitran could not take this lifestyle anymore. While at Nat Geo Traveller, she got to travel across the country and meet many homestay owners. That is when it struck her that there were other ways to live her life. She grew up in Chennai and Mumbai always wanting to live in the country. At some point, she realised that if she wanted to see whether this lifestyle worked, the best way was to do it, because no amount of research was going to compare.

“Now, my days are more fluid,” she says. “I do not have a full-time job, but I do many things at different points of time. The flexibility allows me to choose what I do and dictate the pace at which I do it. There is a big difference from when I lived in Mumbai. Nowadays, I wake up much earlier at 6am. The first few hours of the day I spend with myself, doing yoga, meditation, and taking my dog for a walk. After breakfast around 9am, I decide whether it is going to be a laptop day or a garden day. On a laptop day, I write, edit, or work on a workshop or module. On a garden day, I plant, trim, or fence my garden.”

Before they settled in Pethuparai, the couple travelled to Goa, UP, and a few other places to get hands-on experience on how to grow a garden. They also did a course in permaculture, and applied everything they learned. They did not think they would settle in Pethuparai, but then they fell in love with the community. “The benefit of slowing down is that you give yourself the time and space to think about things, like who you are in your community, and what you can give back to it. The way you interact with the community, and the way it interacts with you,” says Sumitran.

Slowing down your lifestyle is not easy. You don’t magically change your personality. Your habits remain the same. “Initially, I was scared to slow down, because I was scared to meet myself,” she says. “Who was I going to meet, I wondered. I had to learn how to rest. I had to teach myself with great tenderness how to slow down. Many days are difficult because it is not comfortable. Many days are exquisitely beautiful.”

The couple leads a self-sustaining lifestyle today. They get all their greens from the garden. Ten to 20 types of edible greens grow seasonally. There are a lot of herbs, beans, tomatoes, yams, and sweet potatoes. “Every day, there is something or the other,” she says. “Today, I got some chilli, coriander and green tomatoes and made a green chutney with it. Another day, we might get lemon grass, Thai basil or Kaffir lime to make Thai curry.”

They are able to sustain their needs, but it is difficult to save money for something like building a house, she says. But today, her interests and the way she wants to spend her money are different. “I think less is more,” she says. “Because then you can enjoy what you have. I see how much richness and nourishment there is around me. The perspective on what is luxury has changed. Waking up and feeling the sun on my skin―that is luxury. Spending a few hours by the rock pool near my house―that is luxury. My experiences might have narrowed, but their richness has increased. The definition of wealth has changed. Now I think of it in terms of wellbeing, in terms of the number of strong relationships I have, in terms of time. Everything shifts at such a deep level.”

When Kamana Gautam, 40, lived in Delhi, she was a perfectionist and overly concerned about what others thought of her. Her priority was to make money and buy branded stuff. “I started [thinking of] brands [as a] status symbol,” she says. Gautam, a certified nutritionist, moved to Hyderabad eight years ago. And when she had children, she decided she did not want this lifestyle for them. Slowly, she started moving away from it. “In the end, it is all about materialistic consumption,” she says. “We associate our happiness with what we own, whether clothes or anything else. I wanted to detach myself from the notion that happiness can be purchased.”

She decided to homeschool her two children, nine and seven years old. “When I look back at my own schooling, there was constant competition, all sorts of shaming and reinforcing of stereotypes,” she says. “I did not want that for my kids. I wanted to provide a creative environment where they were free to learn on their own. So I decided to give homeschooling a try, and it has been working great so far. They are currently much ahead in academics than kids their age. In addition, they are learning ukulele, crochet, and sign language. The whole idea is to show them the world, inculcate practical skills and build confidence.”

She makes it a point to take them on trips to build a connect with nature and give an idea of sustainable living. “Sometimes it is easy to get carried away by what people around you are doing. It was too much noise for me, and I decided I needed to take vacations with my kids to make them understand that there is life beyond this as well. We started visiting communities where people led an alternate lifestyle. I might take them to a tribal area and make them understand the privilege of having access to electricity and other facilities. They observe how it is the girls who fetch water every morning and how education is denied to so many kids. I wanted my children to cultivate empathy, and provide them with an environment which is conducive for critical and creative thinking.”

She says this kind of lifestyle is not always easy. “Sometimes I take my children for morning walks and they see kids going in school buses,” she says. “And I tell them that they are free to choose. If they want to go to school, they can.” Her family often criticises her for her decisions. Her mother does not like how she dresses her children in simple cotton clothes, often second-hand.

It is also difficult to find people who align with her thinking. When her husband takes her to parties, she is overwhelmed with the socialising. The conversations don’t resonate with her. She goes to the washroom and tells herself to take a deep breath. Despite the difficulties, she would never give up this lifestyle. It enables her to heal and introspect. She is much calmer now. Slow living, she says, helps her to think about herself. “Life is so rushed that we stop thinking about ourselves,” she says.

The pushback against life on the fast lane is growing. When Infosys co-founder, N.R. Narayana Murthy, called for the youth to increase their work hours to 70 hours per week to enhance productivity, the backlash was swift. “Boosting productivity isn't just about working longer hours,” Indian entrepreneur and film producer Ronnie Screwvala wrote on X. “It's about getting better at what you do – upskilling, having a positive work environment and fair pay for the work done.”

According to Malti Bhojwani, mindfulness teacher, executive coach and author of Mastering Your Life, overworking and multitasking destroy your ability to access intuition and creativity. Slowing down allows your mind to settle. She describes four brain frequencies: beta, when you are busy and multitasking; alpha when your brain slows down and you can focus; theta, just before sleeping or showering, when “your mind is wandering and you are a little lost”; and delta, when you are in deep sleep. You are most creative in theta, and a deep mindfulness practice can help you develop it, she says. “There is a saying that one should slow down to speed up. When you slow down, you actually get more work done. Because then you are better able to trust your decisions, you are logical and creative, and you are moving in a direction aligned with your purpose and values. When the right opportunities come, you have the energy and vitality to take them,” she says.

Neeti Mehra, Mumbai-based slow living coach and sustainability strategist, would agree. “The slow life is not escapist,” she says. “Rather, it is dynamic, self-aware and reflective.” Though she studied to become a bean counter, she always wanted to be a writer. She did finally become the editor of a luxury magazine, and has written for several global publications like Conde Nast Traveller and GQ India. However, she felt the need to dig deeper into what life had to offer. She started to eliminate the non-essentials in life, and set out to study more about our “folk culture, social and community responsibility and the simple life”.

Mehra, 45, quit her work and started BeejLiving in 2017, a curated platform to promote slow living. From boutique properties and inclusive skincare brands to classical Indian weaves and heirloom bridal labels, BeejLiving is your go-to place for all things slow, designed for people who are looking to embrace “an old way of new living”.

You do not need to make huge changes to your life to practise slow living, she says. It could just be small things like eating seasonally, decluttering your closet, or composting your waste. “When I got a little composting stall in my balcony, I realised how much of organic waste my household was generating,” she says. “It made me want to recycle and move to zero-waste. So, it is these small changes that make you feel good about yourself.”

Mehra learned about minimalism from her grandmothers, both of whom came to India after partition. “They lost everything when they moved from Lahore,” she says. “When we opened one grandmother’s cupboard after her death, we found two handbags and six salwar suits. That was all. But she looked after them really well. The suits would be hand-washed, starched, and sparkling clean.”

Their lifestyle, says Mehra and the other slow warriors, is more about balance than about speed. There is nothing mechanical in what they do, they mine meaning from even the simplest things. Perhaps, their philosophy is best encapsulated by the NBA player Nikola Jokic, who is known for his slowness in a game defined by its frenetic pace. While the other players zip around desperate to score points, there is a stillness about Jokic and a deliberation about his movements. Each step he takes is a step he meant to take. There is no wastage, only a canny watchfulness. It is like he can bend time to his will.

dr-arbinder-singal-employs-digital-therapeutics-to-achieve-weight-loss-and-diabetes-remission

Sat Nov 25 15:27:09 IST 2023

Dr Arbinder Singal employs digital therapeutics to achieve weight loss and diabetes remission. He started Fitterfly for personal reasons―he had lost two cousins to diabetes. In an exclusive interview with THE WEEK, he talks about his innovative technology that tackles diabetes. Excerpts:

In the last decade, there have been a lot of studies on diabetes reversal. How is Fitterfly contributing to that?

When somebody talked about diabetes reversal a few years ago, I used to laugh about it as a doctor. Because as medical professionals, we never believed that diabetes was a reversible condition. But when we started building the Fitterfly digital therapeutic programme, I was the first patient on it. I was pre-diabetic.

But as a doctor, I am a little wary of using the word reversal because it can mislead. And now a lot of companies, which are not run by medical professionals, are using the word reversal very casually to lure the patients. I am just worried about where we are headed in terms of clinical accuracy when we use the term ‘reversal’.

I think the most important thing to understand about diabetes remission is that it is a whole lot of effort. People get diabetes because of two reasons. One, it runs in families. Second, the environmental impact in terms of bad food choices, less exercise, stress and sleep issues. And most of the time people just focus on a low-calorie diet. But that by itself is inefficient, because people can do bouts of low-carb or keto or low-calorie diets for maybe two or three months, and get into a state of diabetes remission. But eventually, if they cannot sustain it lifelong, it is going to come back. So from that perspective, our research over the last three years has shown that if you just give a diet plan, that is often not sufficient for long-term results. So, we decided to tackle this in a very different way.

At Fitterfly, our first step is to assess the patient’s nutrition―from which a diet plan is derived―and mental health. We assess how open they are to a behavioural change and what the stress assessments are showing. There is a qualified, 20-member psychologist team, which does a psychographic profiling of the patient in terms of adaptability to behaviour change.

If the stress is high, the blood sugars go high. If you don't sleep well for a day, your blood sugar is up by 2-5 per cent the next morning. If you don't sleep well for a month, your blood sugars go up by 10 per cent.

The third thing to assess is the fitness profile. We found that 40 per cent of people with diabetes have knee pain, back pain and shoulder pain. They have poor muscle maintenance and poor flexibility…. And then we work on improving their fitness and decreasing their pain so that they can get moving and do exercises.

Once you address their nutrition, stress and sleep, their behaviour change along with their fitness, then the results are much more sustainable. And they may not even need to do very strict dieting. We are very much against keto diet plans and low-carb meals, because they are not sustainable. Indian people love to eat rice and chapati. They can decrease it. And we found that achieving the right balance is sustainable in the long run. Even reducing carbohydrates by 15-20 per cent, coupling it with a good exercise regime, management of stress and sleep, and using technology to understand the progress is the key to achieving diabetes remission. That is the therapy itself, which is a minimum of three to six months of therapy, ideally 12 months.

Could you explain how you are using technology to assess the progress?

Giving someone a general diet plan doesn't always work. But if I can show you the data of how your meals work, and what happens in your body after each meal, then you will be able to make the choices yourself. So, we developed a technology called PGR―personalised glycaemic response. We believe that every person has a different response to blood sugar with the same food.

We made India's largest food database. So, our food database has 37,000 Indian food items. It is used by different firms to understand nutrition at a very deep level. Then we did experiments on a lot of people to find out what happens in their bodies when they eat certain food. And we found that within the same house where people eat the same food, blood sugars are rising at different levels. This means if everybody's body is very different and their blood sugar response is very different, they should get a very personalised diet plan using technology.

My blood sugars rise with wheat, but my wife's blood sugars do not rise with wheat so much. Her’s rise with rice. And now we have so many patients whose blood sugars rise with millet. We have two patients whose blood sugars are rising with ragi. Somebody's is rising with jowar. We have these case studies on record. So, our idea is that there is no single diet that fits all. It's how our genes are. And if we can use technology to understand what are the real culprits for your blood sugar rising, and ask you to reduce the quantities of only those without giving you a generalised diet, it works well. And one can track this on our app.

The continuous glucose monitor (CGM) sensor will give a real-time reading on my mobile phone. And on mobile, people can either click a picture of or type in what they are eating. We have a system that calculates the calories, carbohydrates, protein, fats and fibres and their relationship to blood sugars. And then our application will calculate what was healthy and what was not. And once you are showing this data to the patient, they automatically understand before eating what is going to happen. Then they make better choices.

How does this sensor work?

The sensor has a microneedle in it, which goes below the skin. You can wear it for 14 days. And then there is an enzyme called glucose peroxidase within the needle, which interacts with the fluid under the skin every 15 minutes. And then it sends out a signal, which is translated and goes into an algorithm, which is then reflected on the app as the blood sugar value.

What was the motivation behind this startup?

I lost two of my first cousins to diabetes. My dad has had diabetes for 35 years. He had a heart attack. He struggled with it. So, when I was diagnosed with pre-diabetes, my blood sugars were going up and down, and a couple of times I fainted in the gym because of the fluctuation of blood sugars. At that time, I decided that I am not going to get diabetes. I got together with all of my friends, and we started building technologies where I could understand my own health. And when I saw the improvement in my own health; my friends, who were doctors, told me they would send some of their patients who needed more support than just tablets. That's how our journey started.

dr-roy-taylor-about-his-twin-cycle-hypothesis-in-diabetes

Sat Nov 25 15:24:46 IST 2023

Dr Roy Taylor is a world-renowned researcher who pioneered studies on the possibility of diabetes remission. On his recent visit to Kerala, Taylor spoke to THE WEEK about his research and his famous twin-cycle hypothesis. Excerpts from an exclusive interview:

How did you arrive at the twin-cycle hypothesis?

The basis of the hypothesis was the work that I had done to try and understand how the body and, in particular, how the liver was controlling the glucose level. I found that the fat in the liver makes it resistant to insulin and glucose production is far too high in type 2 diabetes [patients]. If we reduce the amount of fat in the liver, the insulin sensitivity goes back to normal. That explains the control of sugar in type 2 diabetes. So, this was 2008. And, I put that together with another thought which was if it is too much fat in the liver that is causing this, type 2 diabetes has to be a simple condition. It is always associated with putting on a little bit more weight than ideal. So, I put together my thoughts on the liver with what is happening where the insulin was produced, which is the pancreas. And I said, ‘What if it is too much fat in the pancreas that is causing the problem of not making enough insulin?’Because not only does the insulin not work because of insulin resistance but also not enough insulin is being made rapidly after eating. As I played with these ideas on a piece of paper and drew arrows between the things, I could see it all work as two vicious cycles.

One vicious cycle in the liver would cause a steady buildup of fat in the liver, but then that fat is going to be exported. That is what the liver does. It just gives fat to the rest of the body. If it is too much fat in the liver, maybe too much fat is coming out of it as well and settling in the pancreas and other places. And then that would cause blood sugar to go higher, and that will make more fat in the liver. So we have two vicious cycles, which are interacting.

So that was the twin-cycle hypothesis and it carried the vital prediction that if we reduce the amount of fat in the organs, everything should go back to normal. Now that seemed unbelievable because everybody used to think that type 2 diabetes [cannot be reversed], but I was looking at a hypothesis that says it could be reversed. So, I decided to test this and that's where our counterpoint study came in. I had to invent a diet or a way of losing weight very rapidly. I wanted people to lose 15kg in eight weeks. I chose that target partly because the research money was for a short period of just two years and to be able to study all the patients we needed to have a sure-fire way of losing weight that would work over a short period. But there was an ulterior motive. I know from talking to my patients over many decades that it is much easier to do things for a short while―so focus on weight loss. In eight weeks, the average weight loss observed was 15.3kg. So, it was enormously successful in doing what we needed to do to test the hypothesis. So, we have produced the right conditions. To my astonishment, the blood sugar came down to normal after seven days. They were a mixture of people with a body mass index of 27 up to 45.

But it is not only blood sugar that we measured. I developed a magnetic resonance research centre to help my research on the liver. And, using it we started investigating what happened when the level of fat inside the liver went down. When the fat in the liver went down rapidly, gradually the level of fat in the pancreas went down. People with diabetes had higher than normal levels and this is the first time it was shown that it came down with weight loss. And the insulin-producing cells in the pancreas woke up. So, this was revolutionary stuff and it was so dramatic that doctors were very slow to believe it.

Could you please tell me about your further studies and the publishing of the famous DiRECT study?

After 2011, when we published the counterpoint study―as it was called―we needed answers to two questions. The first: is this something that can be achieved in everyone with type 2 diabetes? Because to test the hypothesis, I studied people only in the first four years after diagnosis. So in counterbalance, we studied people of any duration and what we found was very striking. In the first 10 years, there was a very good chance of reversing diabetes, but it did go down even in those first 10 years and after 10 years the chance of reversing it was much less. So we then knew the diagnosis had to be fairly early and that's why in the DiRECT study, I made the arbitrary decision: six years would be a nice compromise to have most people who could reverse their diabetes; some would not be able to, but most people could.

But the second thing about this counterbalance study was we wanted to follow up. Because a lot of the experts said ‘Look you've just starved people. Of course, diabetes went away. But it's going to come right back as soon as people go back to normal eating.’I did not think that was true. So, we did this counterbalance study where we dropped people's weight by a similar amount and then just asked them to keep their weight steady and we achieved that over six months. The improvements remained; the level of fat inside the liver stayed normal. The insulin production from the pancreas went back to normal. So, it was the counterbalance that set the scene for the big DiRECT study because here we see this could be clinically useful.

Now, most people with type 2 diabetes are managed in primary care. So we had to run a study in primary care; it had to be quite a large study. We studied just under 300 people divided equally between people who have the best possible treatment and people who have undergone weight loss treatment and we found that at 12 months, almost half of the people in weight loss treatment had no diabetes. They stopped their tablets; the sugar level was normal.

Naysayers were still saying this won't last and people will grow heavier than they used to be. It didn't happen so. In two years, people had let their weight creep up a little bit. But even so over a third had no diabetes. Now, we are analysing the five-year followup of the DiRECT study and I don't yet have the final data of that but I know from individuals that if people lose weight and keep the weight off, type 2 diabetes does not come back.

How challenging is it to prevent weight gain and sustain the effects of weight loss?

Losing weight is comparatively easy compared with preventing weight gain because when we humans go back to the same food environment that we had before, eating with a family, eating with our friends and meeting socially, it is very difficult to just backpedal and keep the weight down. There's a real human problem, but it's not a biological problem and we need to distinguish between these two things. If people are successful in keeping their weight down, diabetes stays away. But if the weight goes back to what it was, there's 100 per cent certainty that diabetes will come back.

how-diabetes-can-go-in-remission-with-a-low-calorie-diet-and-regular-exercise

Sat Nov 25 15:22:26 IST 2023

As the afternoon sun beats down on the coastal village of Veli in Thiruvananthapuram, William Pereira, 57, sits down to lunch. His plate is a canvas of colours, with a generous serving of fruit and vegetable salad, a modest portion of rice, sambar and fish curry. His food was not always this colourful, varied and measured.

Pereira is a loco pilot with the Indian Railways. He started his career as an assistant loco pilot at the age of 25 in the Madras division. Over the years, he has held various positions, including goods train driver, yard shunter and passenger train driver before becoming a loco pilot of express trains. “The nature of my job is such that if one day it is night duty, the other day it is day duty,”says Pereira. “It is not a nine-to-five job. As assistant loco pilot, you have to work on all sorts of trains. In goods trains, you may have to spend 96 hours or more. Owing to the nature of this job, having nutritious meals on time has been a challenge.”

But his body, like the trains he manoeuvred, worked like clockwork. That is until July 2020. Pereira was at home owing to the pandemic-induced lockdown, and his body started showing signs that all was not well. “I was thirsty always, and I frequented the toilet to pee,”he says. “Then I spoke to [diabetologist and researcher] Dr Sreejith N. Kumar, who was my classmate at Government Model School, Thiruvananthapuram. He asked for details of any history of diabetes in the family. My mother was diabetic. So, he asked me to check the blood sugar level, and meet him with the results.”

A fasting blood sugar level of less than 100mg/dL is considered normal, and after food normal is less than 140mg/dL. Pereira’s test results showed a fasting blood sugar of over 500mg/dL and after food sugar level of 700mg/dL. Pereira did not want to take lifelong medication or insulin injections. “I took metformin and glimepiride for a year,”he says. “However, within a year, I was able to stop these medications by following a lifestyle intervention and weight loss programme devised by Kumar.”At the heart of the programme is the slogan “platil paathi pachakari (half the plate for vegetables)”. Not only did it help stop his diabetes medication, it also brought down his hypertension medication from 50mg twice a day to 25mg once a day.

Diabetes in remission: A possibility?

Type 2 diabetes was considered to be a lifelong condition for a long time. However, in 2008, UK-based diabetologist Roy Taylor introduced ‘the twin-cycle hypothesis’. In subsequent years, he published groundbreaking studies that showed that the disease could go into remission through lifestyle interventions. The most crucial in this regard was the Diabetes Remission Clinical Trial aka DiRECT study, published in 2016, which showed that a primary care-led weight management programme can induce remission of type 2 diabetes. This study was conducted in Scotland and involved 306 participants who were diagnosed with type 2 diabetes and had a BMI of 27 or higher. The study found that a low-calorie diet (around 800 calories per day) could result in significant weight loss and remission of type 2 diabetes in almost half the number of participants.

“Earlier we thought insulin resistance and insulin deficiency, caused by eight factors―ominous octet―such as lack of physical activity, chronic inflammation and poor diet, led to diabetes. And we thought it was invariably progressive,”says Kumar. “But with the publication of the DiRECT study and other studies correlated with it, it became clear that diabetes can be reversed even in ordinary [primary-care] settings with lifestyle interventions.”

Taylor’s twin-cycle hypothesis emerged from a work he had been doing to understand how the body, in particular the liver, was controlling the glucose level in the blood. When a person eats, his body breaks food into sugar and sends it to the blood. Insulin, produced in the pancreas, then helps the body to move the sugar from the blood to cells. The sugar that enters the cells would be either used immediately as fuel for energy or may be stored for later use. In the case of a person with type 2 diabetes, the body’s cells do not respond to insulin properly, and this condition is called insulin resistance. When the blood sugar levels are high, the pancreas would secrete more insulin to make up for it. However, over time, pancreas would find it harder to create so much insulin to keep the blood sugar at normal levels.

“We found that the fat in the liver makes it resistant to insulin, and glucose production is far too high in type 2 diabetes [patients],”Taylor told THE WEEK. “But then we found that if we reduce the amount of fat in the liver, the insulin sensitivity would go back to normal and, I said, ‘Well, that is fascinating’. I thought that if fat in the liver is causing this, then type 2 diabetes has to be a simple condition―it is associated with putting on a little bit more weight than ideal.”

Taylor then put two and two together―what is happening in the liver with what is happening in the pancreas. He observed that it was not only insulin resistance, but also pancreas not producing enough insulin rapidly after eating that was causing the blood sugar levels to shoot up. “As I played with these ideas on a piece of paper and drew arrows between the things, I could see it all work as two vicious cycles,”he said. “One vicious cycle in the liver would cause a steady buildup of fat in the liver. But then that fat is going to be exported. That is what the liver does; it just gives fat to the rest of the body.

If it is too much fat in the liver, maybe too much fat is coming out of it as well and settling in the pancreas and other places where it should not be. And then that would cause blood sugar to go higher, and that will make more fat in the liver. So, we have two vicious cycles, which are interacting. So that was the twin-cycle hypothesis and it carried the vital prediction that if we reduce the amount of fat in the organs, everything should go back to normal.”

Those who participated in the DiRECT trial received a dietary intervention. “In the trial, it was observed that if the people had lost more than 15kg, 86 per cent of them had their diabetes in remission―and, after one year they did not require any drugs,”says Kumar. “Seeing its impact, we decided that we should also try to implement a lifestyle intervention programme.”Based on a lot of trial-and-error methods, in 2018, he came up with a programme called the Structured Lifestyle Intervention Method or SLIM with a specific focus on the Indian population.

Kumar’s method involves a dietary intervention along with other strategies such as increased physical activity, exercises and behavioural changes. “In SLIM, we follow something called ‘my plate method’or a ‘food plate method’,”says Kumar. “This was a method developed in the west, which prescribes the right distribution of carbohydrate, protein and fat [in a plate]. [A lot of people have a diet that has] an excess of calories and carbohydrates. So, what we are trying to do is, we are encouraging our patients to eat between 1,000-1,400 calories a day so that there is a calorie restriction and a carbohydrate restriction. We ask them to consume less than 50 per cent of calories from carbohydrates, 20 per cent from proteins and 30 per cent from fat. This means filling half your plate with vegetables and fruits, especially low glycaemic index (GI) fruits (which are high in fibre, protein and healthy fats, and low in carbohydrates and sugar), one quarter with proteins and the other quarter with cereals. So, when we translate this, it becomes plenty of vegetables, some amount of low GI fruit, coupled with some proteins. Protein brings satiety and does not increase sugar. But we have to be mindful of the calories. So, a limited amount of protein.”

Dr Vijaya Sarathi H.A., an endocrinologist with Vydehi Institute of Medical Sciences and Research Centre, Bengaluru, claims to be the first in India to start a programme that aims at reversing diabetes. In 2017, he along with three other researchers published a study that observed high remission rates in young Indian diabetics who were newly diagnosed and were put on an intensive lifestyle therapy of low-calorie diet and brisk walking for an hour. The study observed that the remission rates at three months, one year and two years were 75 per cent, 75 per cent and 68.75 per cent, respectively.

Sarathi’s method of dietary intervention is very similar to the one devised by Kumar. “We encourage our patients to go for a more complex, but more balanced [diet] with protein and fat,”says Sarathi. “My focus was more on the patient’s ability to sustain the diet. I typically give a low-calorie, low-carbohydrate diet. And this is working very well. I have many patients who have reversed diabetes within a period of one month to three months.”

Self-driven change

According to Kumar, a patient’s journey to reverse diabetes starts with his passion for the process. “We cannot force them, so one has to be passionate to be involved in the intervention programme,”he says. “We then train them.”First comes a comprehensive evaluation, along with which the participants receive practical and academic training. The practical training, says Kumar, involves giving participants a model breakfast that follows the concept of the healthy food plate method after they give their fasting blood sample. “After this model breakfast, we give them a lecture,”says Kumar. “And, their after-food sugar levels are checked.”

In 2019, Kumar and his team conducted an independent study with 250 patients who had the model breakfast and 250 patients who had a usual breakfast. “We found that the difference between the fasting and after-food sugar levels in those who had our breakfast was only 16mg/dl on average, whereas it was 75mg/dl in the other one. So, they can straightaway see the benefit, and get convinced of our method. And that is a huge motivation. In fact, we observed that one-third of the patients would have lesser after-food sugar levels than fasting levels. And on the day of the testing, we ask them to reduce their medicine dosage by half. So, in spite of halving their dose, when they get the substantial result in their after-food blood sugar, they get convinced about the power of our method.”

This initial session on dietary intervention is followed by a session on exercise. “We get a spectrum of patients for SLIM. As a general rule, we ask patients to walk for 45 minutes to one hour,”says Dr Unnikrishnan Ramachandran, a consultant physiatrist from Thiruvananthapuram. “Those who would like to take other forms of aerobic exercises such as jogging, swimming or cycling are also encouraged to do so. We prescribe only less injury-prone exercises to our patients. We also give 12 sets of exercises that cover most of the major muscles in the body. These include exercises performed with dumbbells and elastic bands, as well as those utilising your own body weight. These are simple things that are known to everybody. But when we give them in a systematic way, people are motivated to stay on the SLIM path.”

Some crucial observations from the study of SLIM subjects in the last few years were presented by Kumar at the International Diabetes Federation’s World Diabetes Congress 2019, held in Busan.

“In the first 50 patients enrolled in SLIM, 86 per cent could lose some weight and 76 per cent could either reduce or stop medicines within three months,”says Kumar. “A majority of them only reduced their medicine dosage. But one thing was certain―none of them had to increase their medicine dosage.”

Thiruvananthapuram resident Sailaja Kumari, 65, a retired Kerala Water Authority employee, used to take 1,000mg of glutformin before she followed the SLIM regimen. “Kumar later reduced the dosage to 500mg and eventually stopped it altogether,”she says. “Additionally, my weight decreased from 78kg to around 70kg, and I noticed significant improvements in my sugar levels. I diligently followed the prescribed food plan, ensuring that a significant portion of my plate consisted of vegetables. I also reduced my cereal intake significantly.”

By 2022, Kumari says she completely stopped taking medicines for diabetes, and could maintain it for many months.

But then something unexpected happened―she had a tumour in the uterus, for which she had surgery. Her exercise and diet went for a toss, and her sugar levels shot up. “I had to be back on medicines,”says Kumari. “Post surgery I started taking 1,000mg. But within months, by being back on a good diet and exercises, I could bring it down to 500mg. I hope that soon I will be able to avoid medicines completely.”

Kumar, who authored the book Prameham Maaran Nalla Bhakashanam (Good Food to Reverse Diabetes), later did a study on 55 patients on SLIM who could completely stop medicines between 2019 and 2022. Of these patients, three were initially only on lifestyle intervention. Twenty-six patients were on insulin and oral drugs―they could stop insulin intake. And, 26 patients were on oral drugs alone and they could stop all oral drugs. All patients continue to be on lifestyle intervention. The study was presented at World Diabetes Congress 2022, held in Lisbon last December.

“Our study was not to find out how many people reversed diabetes in a particular amount of time, but to know the profile of those who had reversed diabetes. We had two criteria: duration of diabetes and the weight loss [achieved during SLIM],”says Kumar. “We found that for those with less duration of diabetes, the tendency for reversal was much higher, which is reported across the world, including in the DiRECT study.”The fat in the pancreas is reversible to a large extent in the initial stages, and that is why the chance for reversal is high in the initial stages, according to the researcher.

“But more importantly, we found that people who had a very long duration of diabetes, even ten years, could stop drugs,”says Kumar. “We also found that people who were taking insulin for a smaller duration had more chances to stop insulin. Even people who had been taking insulin for more than 15 years could stop it.”

The third and most important question that Kumar’s study dealt with was about how much weight one needs to lose to achieve desirable results. “A majority of the patients lost only between 1kg to 5kg [to reverse diabetes],”says Kumar. “So, it is not an unachievable goal. Some had lost only less than 1kg. Very few patients lost more than 5kg. Whatever results we were getting, we were getting it from actual day-to-day life. There was no extra intervention after our initial sessions, though they undergo some routine consultation. That is why we say this is a practical day-to-day method. This reversal of diabetes was achieved not in test conditions.”

Doctors caution that diabetes patients should not take the ‘so-called’reversal for granted, and should sustain the lifestyle changes that helped them lower their blood sugar. “One fine day, all these people may have diabetes again, because what they undergo is a transient reversal,”says Sarathi. “So, there is a debate whether we should call it remission rather than reversal of diabetes.”Also, there is a chance of recurrence in patients with low insulin secretion, even if they follow a strict diet and exercise regimen. “Insulin secretion is something that is dependent on genetics,”says Sarathi. “We cannot regulate that, though the calorie restriction may slightly increase insulin secretion, as shown by Taylor. This insulin secretion, as a natural course for type 2 diabetes patients, may eventually go down. With calorie and carbohydrate restrictions, a person could reduce insulin resistance and make the insulin work in the body better. Even if they maintain the same insulin sensitivity, as the insulin secretion goes down after five years or ten years, they won’t be able to maintain normal glucose levels.”

A lifestyle for all

It is estimated that for every diabetic in India, there is a pre-diabetic. “So even if someone has a normal sugar level, he may have other lifestyle diseases like high cholesterol or high blood pressure,”says Kumar. “The Indian Council of Medical Research recommends a waist circumference of less than 80cm in women and less than 90cm in men. If this is increasing, that is an indication of increased body fat. And that is an indication that this person is going to have lifestyle diseases and cardiovascular complications such as cardiovascular disease, which is heart attacks or strokes. The method which we are suggesting―though diabetic patients are more willing to listen―is a method for everyone in the society to adopt.”

how-nobel-laureates-katalin-kariko-and-drew-weissman-saw-the-future

Sat Oct 28 17:34:18 IST 2023

When Katalin Karikó’s phone rang at 3:40am on October 2, her husband, Bela Francia, grabbed it and quickly passed it to her. “It’s for you,” he told her.

With no number showing up and the person on the line unveiling the seemingly improbable news that she had just won a Nobel Prize, the adjunct professor of neurosurgery at the University of Pennsylvania assumed it was a prank. As did her collaborator Dr Drew Weissman, the Roberts Family Professor of Vaccine Research at the university’s Perelman School of Medicine. “Kati texted me this cryptic message at four in the morning: ‘Did Thomas call?’” Weissman recounted at a press conference on Penn’s campus. “I texted her back and said, ‘No, who’s Thomas?’ She says: ‘Nobel Prize.’” Karikó, 68, told Weissman the Nobel team couldn’t reach him because they had the wrong number for him. “And we said, this has to be a prank,” said Weissman, 64. So, they decided to wait for the official announcement at the 5:45am press conference in Sweden. He told the audience he just sat in bed, “and I was looking at my wife, and my cat was begging for food, and the press conference started and it was real. Then we really became excited about this”.

Messenger RNA (mRNA) pioneers Karikó and Weissman―whose years of scientific partnership unlocked an understanding of how to modify mRNA to make it an effective therapeutic, enabling a platform used to rapidly develop lifesaving vaccines amid the Covid-19 pandemic―were named winners of the 2023 Nobel Prize in Physiology or Medicine. The award comes nearly three years after the rollout of mRNA vaccines across the world.

How they met

It was 1997. Weissman, an immunologist with a PhD in microbiology from Boston University, had recently moved from Dr Anthony Fauci’s lab, where he was studying HIV, to the University of Pennsylvania and was trying to figure out how to make a better vaccine. Most traditional vaccines work by injecting an inactive, weakened or small fragment of a pathogen―called an antigen―to trigger an immune response that the body remembers and can jump-start if the invader returns. But developing such vaccines can take years, and live pathogens pose health risks to those with compromised immune systems.

Weissman was especially intrigued by a single-stranded molecule called mRNA, which brings our cells the DNA blueprint for making proteins so that the body can function. If we could manipulate those instructions, could mRNA be harnessed to create an entirely new kind of vaccine―one that could generate immunity without ever bringing a pathogen into the body?

Biochemist Karikó had always been fascinated with what she calls the “fragile molecule”―the RNA (ribonucleic acid). She had been researching synthetic mRNA for more than 30 years. But her path was not easy. She left her native Hungarian town of Kisújszállás in 1985 and settled in the US. The daughter of a butcher and a bookkeeper in postwar communist Hungary, Karikó grew up in an adobe home without running water, television or refrigerator; her family grew its own vegetables. It was from her parents that she learnt that hard work was part of life, and also to make sausages. A curious kid, she saw the wonders of nature all around her and was determined to become a scientist. She did her PhD at the University of Szeged and postdoctoral fellowship at its Biological Research Center. When the university’s research programme ran out of money, Karikó, Francia (whom she met as a student) and their then two-year-old daughter Susan moved to Philadelphia with $1,200 sewn into Susan’s teddy bear. She had moved to the US on an invitation from a biochemist professor at Temple University. A few years in, she got another job offer, which upset the professor. He reportedly told immigration officials that Karikó was living illegally in the US. Karikó had to hire a lawyer to fight deportation. Owing to legal issues, she lost the job offer.

Her recently released memoir Breaking Through: My Life in Science is a revelation about the persistence of this extraordinary woman who believed that someday mRNA would transform ordinary cells into tiny factories capable of producing their own medicines on demand. She sacrificed nearly everything for this dream, but the obstacles she faced only motivated her, and eventually she succeeded.

The hurdles kept coming even after she joined University of Pennsylvania in 1989 as adjunct professor and researcher. While she landed teaching positions, her grant applications to study mRNA were repeatedly turned down. But Karikó kept her focus on mRNA, exploring how the single-stranded molecules of genetic code could treat a wide range of conditions―from strokes to cancer―and also protect against influenza, among other ailments. Her luck turned in 1997, when she met Weissman and the two formed a research partnership.

“I came to Penn 25 years ago and met Katalin Karikó at a copy machine,” said Weissman. At Penn’s press conference, Karikó joked that Penn should perhaps invest in more copy machines, so researchers have the opportunity to stand around, chitchat, and share their ideas. She added that she and Weissman worked in different buildings and departments, so the meeting was purely luck.

But the duo was as different as chalk and cheese. Weissman has always claimed that “Kati and I are very different people. Kati is very emotional and reactive; I’m very quiet, even-keeled, non-emotional”.

Karikó would agree. “Once Drew showed me, ‘You know, Kati, from A to B, you zigzag, zigzag, zigzag! And I am just like, straight.’ But I told him that when I zigzag, I learn so much,” she told Adam Smith, who was interviewing her on behalf of the Nobel Prize Committee after she got the award. She describes herself as “talkative and bubbling”; Drew, on the other hand, has a daily word quota, according to his wife Mary Ellen, daughters Rachel and Allison and other family members. But despite their differences, the two have maintained a two-and-a-half-decade partnership. “When you would see us looking at the data, we cut each other’s words,” Karikó told Smith. “What it means, you know, we are very ‘alive’.”

For over a decade since they first met, Weissman and Karikó worked to chemically modify mRNA so it could be used safely and effectively in vaccines. In 2005, they published a key discovery: mRNA could be altered and delivered effectively into the body to activate the body’s protective immune system. The mRNA-based vaccines elicited a robust immune response, including high levels of antibodies that attack a specific infectious disease that has not previously been encountered. Unlike other vaccines, a live or attenuated virus is not injected or required at any point.

Cracking the mRNA Code

Many vaccines stimulate immunity and prepare the body to fight against a specific virus by using a weakened or dead version of the actual virus. mRNA vaccines, however, carry a genetic code that causes the body’s cells to produce proteins that the immune system recognises as the virus. The immune system then builds up the necessary defenses against the viral proteins to protect against future infection and severe disease.

Prior to Weissman’s and Karikó’s breakthrough research, mRNA vaccines being developed to prevent infectious diseases did not effectively and safely elicit protective immune system responses in animal models. Weissman and Kariko changed the way the mRNA was made by including specific naturally occurring mRNA modifications that make the mRNA safer, more stable and effective for prophylactic and therapeutic purposes.

Every strand of mRNA is made up of four molecular building blocks called nucleosides. But in its altered, synthetic form, one of those building blocks, like a misaligned wheel on a car, was throwing everything off by signalling the immune system. So Karikó and Weissman simply snubbed it out for a slightly tweaked version, creating a hybrid mRNA that could sneak its way into cells without alerting the body’s defenses. Hence, base modifications in the mRNA almost eliminated the inflammatory response, a discovery that shed light on how cells recognise and respond to the nucleic acids.

Pausing the pandemic

Scientists and investors were quick to see the therapeutic promise of the technology. BioNTech set up shop in 2008, followed two years later by Moderna.

When the Covid-19 pandemic struck, the true value of the pair’s lab work was revealed in the most timely of ways, as companies worked to quickly develop and deploy vaccines to protect people from the virus. Both Pfizer-BioNTech and Moderna utilised Karikó’s and Weissman’s technology to build their highly effective vaccines to protect against severe illness and death from the virus.

Arguably few Nobel winners had a hand in saving more lives than Karikó and Weissman. One study estimates that in the US alone, the vaccines prevented over 3 million deaths and 18 million hospitalisations and saved more than $1 trillion. Worldwide, of course, the effect was even larger.

Gunilla Karlsson Hedestam, a professor at the Karolinska Institutet and a member of the Royal Swedish Academy of Sciences’ Covid-19 expert group, discussed the impact of Karikó’s and Weissman’s findings on the pandemic at a press conference to disclose the 2023 winners. “What's important here, I think, is that vaccines could be developed so fast. And this was… largely due to improvements in the technology, and this basic discovery that allowed this. So, I think in terms of saving lives, especially in the early phase of the pandemic, it was very important,” said Hedestam.

The prize illustrates the pace at which mRNA went from a highly promising but unproven technology to a modality used in almost entire populations. At the press conference, Thomas Perlmann, a Karolinska professor, relayed what Karikó said on hearing the news, explaining how she has undergone “a dramatic change in her circumstances” from losing a job 10 years ago to being a Nobel winner today.

“In order for our society to move forward, we need science,” Weissman said at the press conference. “Everything that’s moved our society forward in the past thousands of years has been science-based: the invention of the round wheel, the invention of transportation, the invention of antibiotics. We need to encourage our children, our grandchildren, and our neighbours, everybody, that science is what moves the world forward. That’s why it’s important and it needs to be supported.”

Karikó echoed that sentiment, while noting that science does not necessarily offer immediate results or praise. “You have to learn how to handle failure,” she said, because more often than not the experiments don't reveal what you hoped. “But you can learn from that …we work hard but we enjoy.” Karikó is the 13th woman to be awarded the Nobel Prize in Physiology or Medicine since 1901.

We nearly missed out on this huge line of research

Karikó was hired by the University of Pennsylvania in a role that put her on track to become a full tenured professor. But she struggled to get grant funding for her work on mRNA. And in roles like Karikó’s, bringing in grant funding was everything. In 1995, Penn demoted her. Anyone of less grit and determination would have just given up long before the groundwork for today’s vaccines was laid. But Karikó persevered. She had to hop from lab to lab at Penn and eventually joined Weissman’s lab, which was working on an HIV vaccine. Together, they ended up taking a closer look at a key barrier to creating mRNA vaccines: the body’s strong immune response to mRNA.

A key scientific hurdle to mRNA vaccination had been cleared. But the hurdles that were a product of our broken academic science system remained.

“We couldn’t get funding. We couldn’t get publications. We couldn’t get people to notice RNA as something interesting,” Weissman said in an interview. “Pretty much everybody gave up on it.”

They tried working toward mRNA vaccination outside academia, founding a small company called RNARx. That too ran into problems. In 2006, Penn applied for and received two patents for Karikó’s and Weissman’s work. But RNARx struggled to come to a licensing agreement with Penn for the patents.

So, according to a 2021 report in Nature, Penn sold the patents for $300,000 to a small lab-reagents supplier in Madison. When the funder backing Moderna called Karikó to ask to license the patents, she had to tell them she didn’t have them. They were eventually sublicensed to both Moderna and BioNTech (which partnered with Pfizer), for hundreds of millions of dollars.

In 2013, Karikó joined BioNTech as vice president. She had to leave Penn and was forced to retire. So in other words, a researcher with a world-changing discovery was for so long unable to get sustained funding to do further research―a clear failure of our institutions for deciding what merits funding.

It’s hard to guess exactly what went wrong in Karikó’s case, but there are some obvious possibilities. Researchers have long complained that a single objection on the committee considering a grant can effectively kill it, making the process highly subjective and leading it to strongly favour incremental, conservative research rather than bold ideas. Even worse, it can end up favouring work that is already halfway done.

One of the best strategies to get a grant is to not apply until you already have very impressive results data, but this strategy highly rewards having a well-funded lab. That makes it very difficult for new researchers to break in―like Karikó, who immigrated to the US at age 30, without financial resources.

It is a fate many scientists are deeply afraid of, and which therefore discourages them from doing work that may not get grants―even if they know it has important, world-changing potential. And she wasn’t able to get other institutional jobs. Thankfully, Karikó had a supportive husband who could enable her commute to BioNTech in Germany to continue her work at a company that saw its potential.

“I think about all of the young girls who may become inspired by my story and want to become scientists. To them I say: stay curious, adopt the right attitude and stay on the track no matter how long and winding that road may be,” remarked Karikó when she was awarded the Lasker-DeBakey Clinical Medical Research Award in 2021.

It is important to note here that mRNA vaccines were the work of countless people, and that no new vaccine is developed by a lone hero―that’s simply not how modern biology works. Many, many other people have worked on mRNA vaccines, and there are probably other routes around the immune system response problem. But if the technology had been even a few years delayed, millions of lives would have been lost, which means that Karikó’s and Weissman’s work, employed in both the Moderna and Pfizer vaccines, was indeed a huge deal.

According to Dr Elena Atochina-Vasserman, member of The Weissman Lab at Penn and adjunct assistant professor of medicine, Karikó’s and Weissman’s technology was like showing someone with a rotary phone the new iPhone―it was a device that didn’t just improve how calls were made; it fundamentally changed how someone moved through the world. “Somebody takes the walnuts from the fire, but you enjoy them all,” said Atochina-Vasserman, who is originally from Russia and is working on a vaccine against the stomach bug norovirus.

Both Karikó and Weissman have received countless emails and letters thanking them for their work. For Karikó, the recognition has been a long time coming. She recounted how till a few years ago, she was known as Susan’s mom―Susan is a two-time Olympic champion in rowing. “And now that my daughter came several times to the awards ceremony with me, she was introduced as ‘Kati’s daughter’,” she said.

Future of mRNA technology

Weissman once said that he does not rest on his laurels and always wants to move forward. “My family and, I am sure, my lab are mad at me… I did not celebrate when the phase 3 clinical trials came in,” he said. “I had already moved on to something new.”

Weissman has now set his sights on a more ambitious target: a pan-coronavirus vaccine. He is now working on a vaccine that will protect against every Covid variant that will likely appear. “Our thinking is that we will use it as a way to immunise the world―and prevent the next pandemic from happening in the future.” Weissman is hardly stopping with coronaviruses. He is working on about 20 other vaccines for diseases from malaria to HIV, with several moving into clinical trials. His lab is also exploring new gene therapies to treat immune deficiencies like cystic fibrosis and genetic liver diseases. One of the most promising projects focuses on curing sickle cell anaemia, a chronic genetic disorder that disproportionately affects people of African descent. In time, he believes mRNA gene therapies can bring hope to research on devastating neurological diseases such as Alzheimer’s and Parkinson’s that have seen disappointingly few advances. ¨

nobel-prize-laureate-dr-drew-weissman-interview

Sat Oct 28 17:22:31 IST 2023

Dr Drew Weissman had dreamed about the seemingly endless possibilities of treating diseases with custom-made mRNA. However, he didn’t expect the mRNA technology he co-created with former colleague Katalin (Kati) Karikó to become critical to some of the Covid-19 mRNA-based vaccines and win them a Nobel Prize.

In an interaction with THE WEEK, done in the midst of the pandemic, Weissman shared the science behind mRNA and his journey to creating the mRNA vaccine technology that is a critical component of Pfizer-BioNTech’s and Moderna’s mRNA-based Covid-19 vaccines and others being developed globally. Excerpts:

Before we discuss the vaccines, could you shed some light on what is the role of mRNA and DNA?

Sure. The way our cell and our body works is that our DNA contains all of our genetic information. Every protein in our body is coded for in the DNA. The way the body makes a protein from that DNA is that it uses an mRNA―a messenger RNA. So, an enzyme copies protein off the DNA, the mRNA then travels to a machine called a ribosome. But it is essentially a machine that can read the code in the mRNA and turn that into a protein. So, it is kind of a middleman. It is in between the DNA and the protein. It is responsible for making proteins in a cell. So, the way the mRNA vaccine works is that we encode the spike protein from coronavirus as an mRNA. We give it to a cell and the ribosomes; the cell machines read the mRNA and produce the spike protein. The body then recognises that spike protein as foreign and makes an immune response against it.

You have been working on the mRNA vaccine for a few years. Could you give us a little bit of history of the vaccine journey?

I came to UPenn 23 years ago and met Kati Karikó at a copy machine. I have studied vaccines and she studied mRNA but wasn't getting very far and nobody in the mRNA field was advancing. So, we started to investigate mRNA in the immune system, and we figured out that mRNA was highly inflammatory and that was problematic. Because if you give mRNA to a patient, you don't want to get sick from it. So, we figured out what made it so inflammatory and then we figured out how to avoid that inflammation and that was our breakthrough in 2005. It is called nucleoside modified mRNA. And what we essentially did was we changed the mRNA, so that the immune system in our bodies did not recognise it as foreign. And that is the mRNA that is used in the Moderna and Pfizer-BioNTech vaccines.

Do you think mRNA manipulation is a holy grail for other diseases as well?

I think the therapeutic platform has enormous potential. It has worked unbelievably well for Covid in the hands of two different companies. We are doing clinical trials for five more pathogens right now. BioNTech and Moderna are doing additional clinical trials. mRNA vaccines are in phase 2 clinical trials for cancer as personalised vaccines and have shown great success or better success so far. It has enormous potential and my guess is that it is going to be a turning point in medicine, but you will have to see.

Do you think mRNA vaccines have an advantage over other type of vaccines? If so, what are some of these that we are seeing for Covid-19?

The two mRNA vaccines from Moderna and Pfizer are the first ones licensed. So, this is the first comparison that we have got. It is hard to say whether they are better or have advantages [over other vaccines]. What we do know is one of their advantages is that they are incredibly quick to make. So, if you have to make an inactivated virus vaccine, that is a lot of work. You have to figure out how to grow the virus, how to inactivate it, how to purify it, how to make sure it is safe. With mRNA you only need the sequence of the protein of interest. So for coronavirus, that is the spike protein and we have known for over 20 years that the spike protein is the principal vaccine component. The day that this sequence was released, we made an mRNA vaccine for it. So it is very quick. It is also very effective. We have seen that in the clinical trials and in the patients―[it had] 90-95 per cent efficacy against any symptoms and 100 per cent efficacy against serious symptoms and death. There are a lot of unknowns still and we will learn those over time.

Is there a difference in the antibody repertoire between mRNA-based vaccines and attenuated virus vaccines?

There are a couple of differences and this has not been investigated well yet. We have investigated in animal models and what we see is that mRNA vaccines give much higher levels. Even in the phase 3 trials, the level of antibodies in vaccinated people were about five times higher than convalescent patients. With other vaccines, the antidotes typically give a level similar to the convalescent patients. So the mRNA vaccines make higher levels of antibodies. As part of that, some of those antibodies neutralise the virus―kill the virus before it can infect a cell―those levels are also higher. We are looking at specificities. So, particular parts of the spike that the vaccines can recognise, and we have identified some that mRNA induces well, that infection doesn't induce and some of those are conserved antigens that may offer broad protection. Those are new and ongoing studies. In general, the mRNA vaccines are better than most other vaccines. They give higher levels of antibodies.

These vaccines are all against the spike protein and when we are using mRNA, you're using a discrete region of the spike protein versus the traditional method where you are using potentially a larger segment. So, are there regions of the spike protein, for instance, which are less subject to mutation, which would be better targets?

Another thing that my lab is doing is we have been working on a pan-coronavirus vaccine and what that means is that there have been three coronavirus epidemics in the past 20 years. It would be foolish to not think that we are going to have more. We are definitely going to have more coronavirus epidemics and potential pandemics in the future. What we started doing last summer is try to make a vaccine that would prevent or protect against any bad coronaviruses that have the potential to infect humans. The way we are doing that is we are looking at conserved regions of the entire virus as well as conserved regions of the spike protein, and we are trying to make vaccines that induce those responses. We had some success; we have made a vaccine that can prevent SARS, which was the first coronavirus we know about, and Covid-19 as well. So it looks like we have the potential to make a pan-coronavirus vaccine. But you are right―it is identifying the right immunogens, the right regions of the spike protein and the entire virus to use in a vaccine.

What do we know about the duration of action of the immune response?

Right now, Moderna and Pfizer-BioNTech are measuring antibody levels over time. We can predict that in a year, [vaccinated people] will probably be well protected, but we don't know if the vaccine is going to last a year, five years, 10 years. The other issue is that a vaccine does two things―it makes memory and it makes effector, which are active antibodies and T-cells. They are only measuring active antibodies in the blood. There are memory B cells that respond very quickly. And for all we know you could have zero antibodies in your blood. But if you have got good memory cells, you will make a response fast enough and you are completely protected. So, it is really going to be about following people over time and seeing when they start getting the disease again, and that will tell us when the vaccine needs to be boosted.

Why do we need multiple shots to make mRNA vaccines create more antibodies? Why is there a more pronounced reaction after multiple shots? And what is shown about delaying the booster dose?

Those are great questions, but we don't have answers to all of them. We have developed probably over 30 different vaccines using mRNA for everything, from Zika to Ebola to genital herpes, HIV, influenza, hepatitis C. Some of those vaccines work well with a single injection, others require multiple. If you look at the phase 3 trials, both the Moderna and the Pfizer vaccines are 80 per cent effective after a single [dose]. What we don't know and what the concern was was that how durable that response is and that gets into basic immunology. And in basic immunology, the first time you see a pathogen or an antigen, the response is limited and it is usually not very potent and the immune system requires a boost, a second vision of that pathogen to make a better response. And that is why most vaccines are given two, three, four times to boost and to improve the response. We see the same thing with mRNA, the level of antibodies goes up about 10 to 20-fold when somebody gets a booster. And that is why you go from 80 per cent to 95 per cent protection. We are now investigating the effect on longevity. Nobody or very few people got a single vaccine with the mRNA. So, it is going to be hard to know [whether] one vaccine dose will give you years of protection. But people wanted 95 per cent protection and good durability and that is why they get two doses.

What about booster dose side-effects? I felt a little lousy, a couple friends of mine felt terrible. Some others were very sick. Is there any data on these second dose side-effects? Or, is this just a case of immune systems being funny and individualised?

If you look at the side effects, 80 to 90 per cent of people get sore arms, swelling at the site and a smaller percentage gets systemic effects. This is telling us that the vaccines are working. This is the immune system responding to the vaccine. It has nothing to do with manufacturing. It has nothing to do with contaminants or any other problems with the vaccine. They appear to be purely our immune system responding. In my mind, it is a good thing if you have an adverse event because it means the vaccine is doing its job. Having said that, we are working on newer vaccines that have fewer of these adverse events, so that the vaccine is better tolerated.

My friend has some familiar arthritis in his carpometacarpal joints, at the base of his thumb. And he seemed to have gotten some severe arthritic flare-ups within 12 hours of his second shot. Is this the sort of thing that you might expect when the immune system gets amped up from that second/booster shot?

Yeah, we just don’t know. I mean look at the vaccines in the phase 3 clinical trials. People with arthritis and autoimmune diseases weren't included in those trials. There is no scientific evidence from any animal studies or earlier human trials that the vaccines will cause a flare up in an autoimmune disease. But that's not to say it may not happen when your immune system is amped up… there is a potential that it will recognise other antigens, autoantigens that it regularly recognises. So this is something that needs to be studied.

As far as we know at this point, are mRNA vaccines less effective on cancer patients or even more specifically blood cancer patients?

Certainly, for anybody with an impaired immune system, the vaccine is not going to work as well. If anybody has had their B-cells depleted with CD19 antibodies or CD19 Car T's, they are not expected to make much of an antibody response. They will still make some T-cell response which offers some protection. We don't have good data yet, but the more immunosuppressed the person is, the less well they are going to respond to a vaccine.

How effective do you think mRNA vaccines would be against newer variants of Covid-19?

What we know so far is that the mRNA vaccines still appear to be effective against all other variants so far. What we don't know is what is going to show up in the future…. So, the concern is that in the future a variant might appear that the vaccine is completely useless against. For mRNA vaccines, it is very simple to make an update―a booster and improvement. I was talking to the person who runs BioNTech who said it would take them six weeks to have a new vaccine in a patient's arms. So mRNA allows you to very quickly update vaccines, which I suspect will be important as new variants appear.

Priya Menon produces and hosts CureTalks, an internet talk show on health care. She works as Vice President, TrialX, a clinical trial solutions company headquartered in New York.

deep-brain-stimulation-surgery-sarah-reeves-defeating-depression

Sat Sep 23 15:46:37 IST 2023

Since the age of 14, Sarah Reeves wanted to die. Respite from wishing herself dead came in short bursts. Once that respite came when she underwent electroconvulsive therapy, which sent massive electric shocks to her brain. But, the respite lasted only a few weeks. Nonetheless, she was encouraged by the outcome and went through the shock treatment again, only to see its effects wear off in weeks. She also tried transcranial magnetic stimulation, in which magnetic fields are used to stimulate nerve cells in the brain to improve symptoms of depression. Yet, the desire and desperation to die would come back to haunt her again and again.

At the age of 20, she was in a car crash with her brother Matthew. He recalls the first thing she told him after the crash: that she was so disappointed that she had not been killed. In her 30s, during a casual conversation, Sarah asked her mother if she knew what it was like to keep living when you really did not want to. Her mom said she did not know, but sought to know why Sarah had asked. To that, she said that she genuinely assumed that everyone would rather die than live. She did not realise such thoughts were unusual.

Sarah's depression “came on severely” at 14 and she tried “dozens and dozens of medications and therapies”, including cognitive and behavioural therapies, but none worked. When depression responds to medication, that might be enough to keep someone well for life. But, what Sarah had was treatment-resistant depression, in which the brain becomes resistant to medication and, sometimes, to other treatments as well. “No medication would stop me from wanting to kill myself,” Sarah, now 38, tells THE WEEK in an interview from Australia, along with Matthew.

If you ask her to pinpoint her triggers, she may not be able to. “I think that is what most people have difficulty understanding,” she says. “Because I have the most loving family and had a happy childhood. I never felt alone and I have really lovely friends as well. So there isn't something I could point to. I know there are lots of people who have had really hard lives and they do not have depression. So I think that depression is very much a physical disease―a disease of the brain. I can only say it is like cancer.”

She says that she worked hard with psychologists for more than two decades to try and change things, but in vain. “I had no symptoms; we first thought puberty could [have] been a trigger since it all started at 14, but then it stayed for so long,” she says, in a soft and assured voice―a sign that she was in complete control of her mind now.

Around three months ago, Sarah underwent deep brain stimulation surgery for severe depression at Mumbai's Jaslok Hospital at the able hands of Dr Paresh Doshi, head of the department of neurosciences. DBS is mostly used for Parkinson's patients and it involves implanting electrodes in the brain under local anaesthesia. The electrodes are connected to a pacemaker through a subcutaneous wire. The pacemaker is programmed with a remote to emit small pulses of energy through the electrode to block abnormal activity in the brain.

“Before I heard about this surgery, I thought the end was coming,” says Sarah. When she came to India, she says, she had fully planned her suicide. “And, yeah, I was going to carry out that plan if [the surgery] did not help,” she says. “I had nothing to lose, I just felt really bad for my family. I did not expect it to work at all because I was just unable to believe that anything could help.”

Now, she says that her energy is constantly increasing. “I am able to do more this week compared with last week,” she says. “So, I need to keep listening to my body to figure out when I need rest or when I can do more. I am in Sydney catching up with friends right now; something I have not had the energy for in a long time. I have been here one month and, at the start of my time here, I had to schedule a day between catch-ups to rest. But, in the weeks I have been here, I am not as tired after socialising anymore. So now I do not need much time between catch-ups.” She adds that she has met more friends than she had expected.

Post the surgery, she has started completing a monthly Montgomery-Asberg Depression Rating Scale. The scale determines the severity of depression. She says her scores are improving drastically. “My most recent score was almost three times [better] than my pre-surgery score,” she says. “So, in three months, my level of depression has more than halved, according to this scale.”

Matthew says psychologists diagnosed Sarah's depression to be organic, unlike the milder version of depression which can be treated with counselling and therapy. Organic depression does not seem to need any psychological trigger. “And it looks quite different,” says Matthew. “We noticed that Sarah's speech and her movements became slower. She had a lot less energy when her depression was bad and it had quite a physical impact on her.” They are a family of five, and Sarah's two brothers are married. Sarah, who is an occupational therapist, has not been able to work for five years and lives with her parents. “I have done various voluntary things, but not been able to properly work,” she says.

She says that with people like her, those who do not know them well do not see anything wrong. “I do not show it from the outside; you would not look at me and say she's planning her death,” she says. “But, it is quite common. That is why people are constantly shocked by celebrities or people who seem quite happy killing themselves. It is because it is a physical illness that someone can look quite normal, but they are not actually okay.” She laughs as she speaks, but the emotion is evident.

“Before surgery, I would just be in bed and then have a shower at 4pm or 5pm,” she says. “If I could, I would take my dog for a walk and then I would be so drained that I would need to get back to bed. So it was not just psychological or emotional, but a very physical lack of energy.” It was just very hard to do anything, she says, adding that it took her several hours to work up to having a shower, because that was so hard. “Sometimes, I [would] just sit on the bathroom floor, trying to make myself take a shower,” she says. “I used to wake up completely exhausted, like I had just run a marathon.”

Now, she says, she is just able to get out of bed and do things. “Just little things that I was not able to do, like housework, laundry, cooking, baking, making my parents tea,” she says. “I am able to go on really long walks. The other big difference has been wanting to spend time with people and actually having the capacity to do so. Earlier I would dread spending time with anyone, including my immediate family. It was not because I did not like them, just because my energy was so low and any interaction with humans was so draining.”

Sarah has been regularly visiting Matthew and spending time with his kids. “Earlier, she would spent half an hour or one hour with my children and get too tired and leave,” says Matthew. “Now, she is more involved with them.” Most important, she is not having suicidal thoughts. “That is just a massive respite,” she says. “I do not know how to describe that, to not be thinking about death and not be in that constant state of despair.”

Doshi of Jaslok Hospital says that this lack of zest for life in people with organic depression is typically termed as anhedonia. He recalls the case of Benjamin, who was the first patient to have undergone the surgery for depression in Asia and Australia, in 2013. Doshi was his surgeon, too, and Sarah had also consulted Benjamin, a fellow Aussie. Ten years after surgery, Doshi says, Benjamin continues to improve and is now successful at his workplace. “He surfs and has children,” says Doshi. He adds that it usually takes six to eight months for patients to start getting the maximum benefit.

Sarah was anxious before the surgery because she felt it was her last option. Another issue was that she also had post traumatic stress disorder caused by a “couple of errors” during her shock treatment. She would have to be awake during the surgery and her head would be fixed into a frame and she would be bolted to avoid movement. “I knew that would definitely trigger my PTSD,” she says. “I prepared for it with my psychologist and we did eye movement desensitisation and reprocessing therapy. It involves moving your eyes in a specific way while processing traumatic memories.” It also helped that Matthew was accompanying Sarah. “She actually said that she wanted to die in surgery,” he says, laughing. “She came out disappointed that she had not died.”

When Sarah developed depression, her family took her to a general physician. “I was given access to medication and psychological support quite early on,” she says. But, in high school, she hid her condition fearing stigma. Even into her late 20s, she did not show that she was struggling. She became a lot more open about it in her early 30s. “Because it was not easy to hide it when you are at the hospital (her workplace) or late for work, people know” she says. “In the past 10 years, I have lost all my inhibitions regarding talking about my depression and I have been really open about it with everyone. Because I know that if nobody is going to talk about it, [it would not be discussed enough]. So, we need to be more open about it.”

Matthew, who works in the area of public health, says that Sarah's friends and colleagues found it difficult to understand her. He cannot recall the last time he saw her normal and well. “I struggle to remember what she was like before she was unwell,” he says. “It has been 24 years. In this time, she has not been able to express her interests and her personality in the ways she might have wanted to. There was a period from the ages of 14 to 18 where my parents, my brother and I noticed that she had less energy. She had several tests to check if there was some viral or post-viral fatigue or chronic fatigue problem, hormonal disturbance, because we did not know that there was all this stuff inside her. She was not telling anyone.” One of Sarah's friends, too, had severe depression and had taken his life, says Matthew.

He says that when she first stopped going to work, the family thought it was stress. “She had been put in a stressful position and then several people had left the government department she was working with,” he says. “She kept getting promoted and given more and more work, and eventually she burnt out. Then, she was studying and the same thing happened. She became more and more stressed. It was the depression causing the stress.”

Despite being a family of doctors and PhDs, the Reeves family was helpless. “We felt angry and guilty that someone in our family had to go through this and we could not do anything,” he says. “If it was not for depression, Sarah would have been married a long time ago. Everyone else in our generation in the family has done studies to the level of a doctor or a PhD doctorate. But Sarah, who was academically bright, had her studies interrupted.”

Sarah lived in India for a while, working as an occupational therapist and would have loved to settle here as she was enjoying it. But it was not possible to maintain that for long because it was a stressful job. “Just like cancer, severe depression aims at every part of your life and removes all the potential and capability and opportunities,” says Matthew. “That was also our thinking and reasoning when it came to surgery for depression. When we can go for surgery for deadly cancer, then why not this? They are both life threatening.”

Nobody in the Reeves family has had severe depression similar to Sarah's. However, relatives on both her mother's and father's side have had depression that was manageable with medication.

The DBS surgery for depression is prohibited in Australia. Doshi says the surgery is not without risks. “There is 1-2 per cent risk of death, with bleeding,” he says. “It is low, but not insignificant. That is one of the reasons it is not approved in Australia.” Matthew says even a 50 per cent chance of death was worth it, in case Sarah was going to try to kill herself. “[Risk of] death in surgery is better than the risk of suicide attempt,” he says.

There are many Indians who want this surgery, but Doshi says the surgery cannot be offered to most Indian patients for multiple reasons. “Firstly, Indians with moderate to severe depression do not come with full medical history,” he says. “They do not fit into our selection criteria and one of the reasons is the lack of data. They have not been exposed to the proper level of treatment. It is critical that you exhaust all possible medical options and this is the final step.”

Doshi says that Indian patients mostly come in having tried haphazard treatment. “They say, 'I went for behavioural therapy, I did not like it, so I stopped',” he says. “They have no details, like date, prescription, psychiatrist's note or therapist's note, for us to know what the outcome and benefits were. Some say they tried more than 20 drugs, but cannot produce documentation. They do not even know the names of the drugs, the duration or who prescribed it.” Doshi said all this information is available in the case of international patients and that was why the surgery was being offered to international patients.

The preparation of the surgery begins one and a half months earlier. “After all approvals from the [authorities], we start preparing the patient 15 to 20 days before surgery and checking their medical fitness,” he says. “The patient is admitted two days prior to surgery and detailed investigation about the particular disease is made in an objective evaluation. There are a lot of video recordings and consultations with the patient and psychiatrist and we do objective scoring, which can tell us the exact status of the patient. A detailed description of the patient's symptoms is also captured.”

This is followed by an MRI under general anaesthesia, because the patient is required to remain still. The MRI is a long process of around 40 minutes for DBS patients as against 20 minutes for others. Then there is planning―where to go in the brain and how to go, counselling the patient (the patient is awake in most of these surgeries). The procedure involves making small holes on the head and inserting the electrodes.

“Once we insert the electrode, we stimulate the target and identify the response,” says Doshi. “In Sarah's case, her anxiety became better and she felt like connecting to her surroundings. Sarah said her fatigue was going away and that she was feeling more energetic―all this on the table. She said her anxiety was going away, but not sadness. Sadness takes a long time to go. But this told us that we are at the right spot and then we fixed the electrodes there, and then from behind the ears, connected the pacemaker, which is implanted under the chest.”

The target for the procedure is an area in the brain called Brodmann Area 25. “Everything is adjustable, programmable with a remote control that can be used by the patient and only the pacemakers are removable, not the electrodes,” says Doshi. In the case of Sarah, he says, she has covered most of the ground with regard to healing. “I do not think more healing is required,” he says. “She has reached 80 per cent normalcy and the last 15 to 20 per cent will come over a period of time.”

the-story-of-medics-working-in-ukraine

Mon Aug 28 13:12:54 IST 2023

The Siversky Donets River divides two warring nations, separating southwestern Russia from eastern Ukraine. It meanders its way from the Central Russian Upland, north of Belgorod, flows through Ukraine’s Luhansk and Donetsk Oblasts―Russia’s initial targets in its ‘special military operation’ that began on February 24, 2022―and returns to its origin country. In the early months of the war, Russian soldiers had tried to cross the river several times but were stopped by Ukrainian forces. And so, the river continued to act as a natural boundary. Perhaps, that is why four children in Pryvilla, a town on the banks of the river in the Lysychansk municipality of Luhansk Oblast, were out playing even as the threat of a Russian attack loomed. Sadly, rivers do not wall up, and the children got caught in the shell firing that ensued when Russian forces crossed the river between June 28 and June 30 last year.

The Pirogov First Volunteer Mobile Hospital (PFVMH), a Ukrainian nonprofit of civilian health care professionals, was immediately notified and an evacuation team was dispatched to Pryvilla to transport the children―two boys and two girls. By the time the team arrived though, the boys had succumbed to their injuries. The older of the two girls, aged 12, showed remarkable bravery in leading her younger sister to a cellar. But in the process, the girls suffered severe injuries.

The PFVMH team acted swiftly to transfer the girls to a field hospital in Bakhmut, 55km from Lysychansk. The older girl was proclaimed dead on arrival. The younger girl’s condition, meanwhile, was rapidly deteriorating, and the field hospital was ill-equipped to provide the advanced trauma care she desperately needed. So, the PFVMH made a daring decision to transfer her to Mechnikov Hospital in Dnipro, a renowned medical institution dating back to 1798. That meant traversing 200km of war-hit areas.

“We have seen many ambulances and extraction vehicles that were shot and destroyed by Russian anti-tank missiles, automatic guns and rifles,” Gennadiy Druzenko, cofounder of PFVMH, tells THE WEEK. “The Russians do not adhere to the rules set by the Geneva Convention and other international agreements that protect medics. So vehicles carrying medics on the frontline have to avoid putting the red cross, which is typically a symbol of protection in the battlefield or war zone. Instead, we had to camouflage our vehicles using green colours to make them less visible.”

Despite the risks involved, the PFVMH transferred the girl to Dnipro without significant delay, and the girl survived, miraculously. “They told us that we had achieved the impossible,” says Druzenko, pride showing in his voice. “The girl's survival became one of the most significant emotional triumphs for our entire team.”

PFVMH was founded in 2014 after the outbreak of the civil war in the Donbas region of eastern Ukraine, during which armed Russia-backed separatists seized Ukrainian government buildings and declared independence. PFVMH provided medical aid in conflict zones, operating its mobile hospital at 49 locations in Donetsk and Luhansk Oblasts and treating over 56,000 patients. It attracted nearly 500 skilled medics, paramedics and support staff from diverse backgrounds. When the pandemic struck, PFVMH scaled down its activities in the conflict zone, with volunteers returning to their respective hospitals as Covid warriors. But it remained prepared to respond to emergencies. With the onset of the Russian invasion, PFVMH resumed its critical operations.

PFVMH is arguably the most effective civilian initiative working on the frontline to ensure medical care for both combatants and civilians within the ‘golden hour’―the critical 60-minute window from the time of injury for a patient to receive definitive care. Its evacuation team comprises an emergency care medic or an anaesthesiologist, a nurse and a driver, with additional security personnel in high-risk areas. The team has treated more than 23,000 people in the last one and a half years.

The PFVMH delivers its service in the different stages of pre-hospital care. “We have pass-over points near the battlefield, where we extract wounded soldiers and transfer them to stabilisation points,” says Druzenko, who was a constitutional lawyer before becoming a volunteer frontline medic. “At these stabilisation points, we have a forward surgery group, which deals with heavily wounded cases. After that, we transport the wounded to rear hospitals, and we also work alongside military medics at the stabilisation points. Our frontline team consists of around 40 to 50 medics, plus technical personnel, including drivers, technicians, bodyguards, cooks and cleaners.”

While it lacks the social protection and guarantees from the government that combatants receive, PFVMH ensures thorough training for its medics before deploying them on the frontline, holding regular monthly training sessions in Kyiv. Doctors volunteering with PFVMH receive Tactical Combat Casualty Care training, which teaches evidence-based, life-saving techniques for trauma care on the battlefield. They are provided with body armour, helmets and individual first-aid kits.

“The Ukrainian army entrusts us with the extraction of its wounded soldiers, knowing that our professional medics have the best chance of delivering them safely to hospitals,” says Druzenko. He recalls saving a wounded soldier in Sloviansk, Donetsk region, during a heavy battle. “His heart stopped four times,” he says. “Each time, we managed to revive him, and he regained consciousness. Later, we realised it was his birthday that day. So, it was like a second birthday for him on his birthday.”

The exact number of combatants killed or injured―both from the Russian side and the Ukrainian side―is still unknown. But it is estimated that at least a lakh soldiers from both sides have been killed or injured so far. The number of civilian casualties is also uncertain, but the Office of the UN High Commissioner for Human Rights documented 26,015 civilian casualties between February 24, 2022, and July 30, 2023, including 9,369 killed and 16,646 injured. Nevertheless, the OHCHR acknowledges that the actual civilian casualty figures are likely higher, as some reports are still pending corroboration in locations like Russia-occupied Mariupol in Donetsk and Lysychansk, Popasna and Sievierodonetsk in Luhanska. Donetsk, Kharkivska and Luhanska oblasts in eastern Ukraine, Kyivska in north-central Ukraine and Khersonska in southern Ukraine had the highest number of civilian casualties, with the numbers peaking in March and April 2022.

However, when considering morbidity and mortality caused by war, one has to look beyond what happens on the frontline.

What will you take with you while fleeing a war?

“In the initial phase of the war, there was a higher incidence of trauma in the civilian areas, but this has decreased over time,” says Dr Santhosh Kumar, an Indian war surgeon who was medical director of Project HOPE at Ukraine Emergency Response for a year. “The majority of morbidity now arises from non-communicable and communicable diseases.” This shift is attributed to the significant internal displacement that occurred in Ukraine since the war began. It is estimated that at least 6 million Ukrainians are internally displaced, and over 8 million Ukrainian refugees have been registered across Europe since the start of the war. “As people migrate, the ones with more resources tend to move to cities and rent places to live. However, as the war continues, many lose their resources and end up in suburbs, villages and eventually uninhabitable places,” observes Kumar. “They lose access to essential services such as health care, electricity and water. This lack of access to health care has serious consequences.” For example, individuals with chronic conditions like hypertension or cardiovascular diseases may not be able to reach health centres or clinics to obtain their medication owing to transport difficulties. Consequently, they stop taking their medicines, leading to health complications and even death. “The situation is particularly concerning for pregnant women, as they may have no access to proper facilities for delivery, leading to increased maternal and infant mortality,” he adds.

Having worked in conflict zones in more than 45 countries, Kumar found the Russia-Ukraine war to be a unique experience. What he saw in Ukraine left him devastated, yes, but also deeply reflective. He recounts an instance involving an internally displaced woman from Kherson in southern Ukraine. During the evacuation from Kherson, a bridge served as the final point of embarkation for those fleeing, where Kumar and his team conducted medical checks for those being transported. That is where he met this elderly lady carrying a bag with toys. Intrigued, he inquired about it. She told him that she had hesitated to leave the city when her daughter and granddaughter had left three months earlier. However, as the war escalated, she decided to leave.

“Before leaving Kherson, the old lady asked her grandchild what she wanted to take from the house, and the little one chose her doll and teddy bear,” says Kumar. “And so, this grandmother brought only those toys with her, leaving behind all her other belongings, including valuables and clothing.” That interaction made Kumar wonder what he would choose to take with him in a similar situation.

Kumar emphasises that internally displaced people are highly vulnerable to disease outbreaks like typhoid and cholera. As they move from villages to forested areas, water resources become scarce, and with the increased population in these locations, water sources can get contaminated. For instance, Pervomaisk, a city in Mykolaiv Oblast, saw an outbreak, caused by faecal contamination of the water source owing to the lack of proper toilets.

Furthermore, bombing or missile attacks impacted critical infrastructure like power stations and water purification centres, leading to prolonged water shortages lasting up to four days. This compelled people to seek alternative, though contaminated, water sources. The harsh winter conditions also made it difficult to boil water without electricity, exacerbating the challenge of accessing clean water.

The destruction of Ukrainian health care facilities worsened the situation in many places. A report published by Physicians for Human Rights this February observed that during the first weeks of the war, there were constant and daily attacks on Ukraine’s health care system. “For 35 days, Ukraine’s health care system was damaged every single day,” it read. “Assaults were particularly intense in February and March. During the first two weeks of the invasion, an average of four to five hospitals and clinics were attacked daily. Attacks continued throughout the year, with 235 attacks on health care overall in March and an average of 47 attacks each month from April through December 2022.”

Kumar, who has been to almost all major conflict zones since 2005, notes that he witnessed this pattern of hospitals being targeted in various war zones. He explains that in many places, hospitals are viewed as valuable assets for the enemy to repair and reinforce their combatants. As a result, targeting hospitals becomes advantageous, as it hinders the enemy's ability to repair and send their fighters back to the field.

To address the issue of limited access to health care for civilians, which was exacerbated by the destruction of hospitals, humanitarian programmes like Project HOPE employed several approaches in Ukraine. Kumar highlights the use of mobile medical units (MMUs) equipped with doctors, nurses, essential medicines and some lab equipment. These units travel to remote areas, providing people with much-needed medical care and essential drugs. “For pregnancies, regular checks and ultrasounds were conducted to ensure comprehensive maternal health care,” he says.

Since March 2022, Project HOPE's MMUs have provided more than 2,54,000 medical consultations, supporting over 350 existing health care facilities. It also employs “surge capacity improvement” strategy, which, explains Kumar, involves providing additional doctors to hospitals and sub-centres, enhancing facilities, setting up gynaecological rooms and ensuring a steady supply of essential drugs. It also offers training opportunities to improve the skills of health care providers.

Trauma care in a war zone clearly differs from one in peaceful areas. While about 95 per cent of trauma cases in peaceful areas are related to road accidents, most injuries during a war are caused by bullets, barrier sticks, sharp objects, explosions and related to burns. Kumar points out that the health community often mistakenly tries to treat war-related injuries using the same approach as road accidents, but it requires different training, equipment, facilities and management systems.

Kumar now leads a trauma training programme in Ukraine offered by the Harvard Humanitarian Initiative (HHI). Initially, the programme trained the doctors directly, but concerns arose about its sustainability after the HHI’s departure. To address this, the idea of training universities and establishing dedicated training centres within them was proposed. This way, knowledge and skills can continue to be passed on even after the team leaves.

According to Kumar, only a few dedicated teaching institutes worldwide focus on handling war trauma. “Considering the significant funds invested in destruction and warfare, the resources allocated to address these medical challenges seem comparatively minuscule,” he says. “We envision these institutes to cater to diverse audiences, from civilians to doctors, with universities serving as centres for the training.” The courses include Advanced Trauma Life Support (ATLS), vascular surgeries, orthopaedics with external fixation, dental surgery, abdominal surgery and ultrasound-guided nerve blocks exclusively for doctors. There are also courses like trauma nursing fundamentals for nurses and Stop the Bleed, which is open to laymen.

“For instance, a doctor may not necessarily need expertise in performing a full bypass surgery, but it is crucial for them to possess specialised knowledge in certain aspects of vascular surgery,” explains Kumar. “Similarly, in orthopaedic surgery, they may not require proficiency in procedures like pelvic internal fixation or total replacements, but familiarity with external fixators and splinting is essential.” The training programme also covers organising MMUs, surge capacity management, drug transport, rapid assessments, trauma care system establishment and field hospital setup. “These are novel concepts that even mature societies find challenging to grasp,” he adds.

Undoubtedly, a specialised training programme for managing wartime situations will yield diverse advantages in delivering services. Moreover, there have been numerous instances demonstrating the dedication of Ukrainian health care professionals, who have willingly taken on roles that go beyond their regular responsibilities.

Could you prescribe a dose of tender loving care with the medicines, please?

Dr Oleksandra Shchebet, a young Ukrainian neurologist who had a private practice in Kyiv, is an example. She was among those who initially did not believe that the Ukraine-Russia tensions would escalate into a full-scale war. However, when war came knocking, she sought refuge in Lutsk, her native town, where she had relatives.

In a gruelling journey, she, along with her relatives, including her grandmother and a three-year-old nephew, drove almost 24 hours without sleep to reach Lutsk, which is close to Poland and the Czech Republic. Once there, the family found an apartment on rent, but Shchebet refused to remain idle. She worked in a warehouse for hours, receiving, sorting and redistributing food and medical supplies to frontline areas in Ukraine. During the initial phase, Ukrainians faced a severe shortage of medications due to panic buying and delivery restrictions. Shchebet played a pivotal role as a key contact person for doctors across different parts of Ukraine, arranging specific medicines from Poland or the Czech Republic to address this urgent need. “In Lutsk, our storage, capable of holding over 500 pallets, became a central point for sorting supplies before dispatching them to regions in need,” she says. “With postal services non-operational, our volunteers took on the risky task of delivering supplies by car to different regions.”

Among the medical supplies from neighbouring countries, Shchebet discovered emotional letters filled with wishes for speedy recovery and good health of the people of Ukraine. In one package from Poland containing medicines to prevent haemorrhaging, there was a heartfelt letter stating, “I wish you won't need this. Come back home, and alive.” Moved by such sentiments, she reciprocated the same spirit while sending medications to patients in war-battered zones.

“While sending medications and food supplies to internally displaced people from the eastern parts of the country, who were now living in shelters, I provided detailed personalised prescription on how to take them properly,” she recalls. “To my surprise, people expressed their heartfelt gratitude not for the food or medical supplies but for these instructions. They felt a strong connection, even though we had never met. One woman even contacted me to say that reading my prescription made her feel cared for and understood on a personal level. This experience touched me deeply because it allowed me to show people that I genuinely care, even amid challenging circumstances.”

From the early stages of the war, Shchebet has been providing online consultations as well. In the absence of a national digital health platform for messaging and video consultations, most people reached out to Shchebet for help through Facebook. She responded to their needs by assisting with texts, voice messages and video consultations.

Shchebet recounts that she handled many heartbreaking cases then. “Once a girl texted me saying that her nonagenarian grandma was ill,” she says. “The girl told me, ‘We are in a shelter right now, it's bombing outside. Grandma’s unconscious. What should I do?’” She was out of Kyiv, somewhere close to the east; emergency services couldn't reach her there due to the bombing.

So, Shchebet asked her about her grandmother's symptoms. “I recognised it was an acute stroke,” she says. “It was devastating because I was not in a position to help her physically. So, what I did was give psychological support to the girl. I kept talking to her over the phone, convincing her that her grandma doesn't feel any pain, that she was just in a deep sleep and all that stuff. Unfortunately, the old lady passed away within the next 12 hours, but that girl later wrote to me and thanked me, even though psychological support was the only thing I could give her at the time.”

Shchebet is also trained as a Gestalt therapist (looking at the whole picture more than just as a sum of the parts) and psychotherapist. Over her 15-year practice, she sought additional education on treating patients experiencing acute stress and post-traumatic stress disorder (PTSD), especially after the onset of the war in Ukraine in 2014, which brought an influx of internally displaced individuals to Kyiv. Although she doesn't possess a psychotherapy license, the specialised training equipped her with essential skills to communicate effectively with these individuals.

Interestingly, the evening before the war began last year, she was attending a conference on mental health in the post-Covid period, not knowing that she would soon be dealing with the war's impact on mental health. Initially, she encountered cases of anxiety and acute stress as people were disturbed and unsure what to do. As time passed, she started seeing an increase in depression cases. PTSD began to emerge later, as it often develops over time.

Currently stationed in the United States as clinical research coordinator at Nova Southeastern University, Florida, Shchebet continues to offer online services, addressing mental health and neurological challenges caused by the war in Ukraine. She notes that many people now complain about sleep disturbances due to frequent air raids occurring mostly at night.

“People are experiencing nightmares and lack of energy during the day, leading to difficulties with concentration and memory,” says Shchebet. “Children also suffer, mentioning reduced energy for outdoor play due to safety concerns. They reveal experiencing headaches and back pain, as they have to remain indoors most of the time. Additionally, high levels of anxiety and depression contribute to headaches. Interestingly, I have observed an increase in chronic headaches, surpassing pre-war levels. Many individuals who never had headaches before now claim to experience them almost daily. Addressing this issue has become a priority in our efforts.”

Olga Gershuni, a Netherlands-based Ukrainian public health scientist and programme director of nursing and mental health initiatives at the nonprofit Health Tech Without Borders (HTWB) in Ukraine, stresses that mental health concerns cover a broad range and are frequently overlooked until they manifest and become overwhelming for individuals. She highlights the different ways people cope with stress and traumatic circumstances. “For example, those who have witnessed traumatic events without being physically attacked may face different mental health issues compared to those directly involved in combat or returning home to find their families gone,” says Gershuni. “Amputation trauma can also profoundly impact individuals, and children displaced and separated from their families face unique challenges.”

Can a country torn by war house a ‘safe place’?

Olena Lutsenko, a psychologist and art therapist based in Kyiv, primarily focuses on working with women, children and adolescents. “Women found themselves in a situation where all the responsibility for raising children fell on their shoulders, as their husbands went to the frontline,” she says. “Prolonged stress and psycho-emotional overstrain led to physical exhaustion, sleep disorders, lack of self-confidence, lowered self-esteem, increased aggressiveness and the development of guilt.” Meanwhile, children and adolescents do not have the personal resources and experience of problem-solving that adults do, she explains. “Because of war, they become even more dependent on their parents, who have to take excessive care of them and literally save their lives,” she says. “This is especially true for teenagers, who, due to the constant threat of danger, have almost lost the ability to move freely and spend time with their peers as they did before the war. Of course, such restrictions worsen their emotional state and hinder the development of their communication skills.”

Art therapy techniques, which encompass providing psychological support through creative mediums such as drawing, painting, visualisation, dance, expressive writing, drama and music, are generally considered to have minimal contraindications. However, according to Lutsenko, specialists in this field have encountered several challenges in their work since the outbreak of the full-scale war.

“We faced obstacles in using familiar methods and exercises, such as those centered around creating a ‘safe place’,” she recalls. “In Ukraine, the concept of safety had been physically erased due to the conflict, making it exceedingly difficult to establish a new sense of security within a short timeframe. Another concern is the risk associated with engaging in visualisation exercises with closed eyes, as it could lead to a loss of control and management over the therapeutic process. The third issue revolves around the potential danger of re-traumatisation through the use of metaphors that might prove unsuccessful and distressing during a wartime setting.”

So, art therapists like Lutsenko worked innovatively on the techniques in order to make them effective for contemporary Ukraine. “At each session, we adopted breathing exercises to stabilise the emotional state [of participants],” says Lutsenko. “Instead of an unattainable 'safe place', we create places of 'strength and recovery'.”

Prior to launching support groups for children and internally displaced individuals, the All-Ukrainian Art Therapy Association, led by art therapist Olena Voznesenska, initiated an open emotional support group for adults. Commencing in early March 2022, this endeavour extended for nearly a month and saw participation from educators, psychologists and art therapists. This session proved pivotal in the development of new art therapy techniques tailored to conditions affected by war. “We found ourselves simultaneously as both participants and researchers,” says Lutsenko.

Lutsenko underscores that these innovative methods greatly aided individuals in expressing their inner experiences even without relying on words. She recalls a session with teenagers, where she asked them to fashion a landscape using plasticine. “In the course of the exercise, a 14-year-old girl crafted two mountains adjacent to each other and a third mountain separately, after which tears welled up in her eyes,” she says. “To restore her emotional equilibrium, we employed a technique known as the 'butterfly hug'. Subsequently, the girl disclosed her feelings. She conveyed her concerns and longing for her father, who had been stationed on the frontlines for a year. Through this metaphorical expression, she was able to articulate her struggle and process her emotions.”

Lutsenko also recalls numerous remarkable occurrences while working with children. She recounts an incident involving a girl who had fled a Russia-occupied region along with her mother. “Although she had attended classes for a month and a half, she had fallen silent,” says Lutsenko. “However, during an art therapy session conducted in collaboration with Brian McCarty, an American artist and photographer known for his work with children from war-torn areas, she began speaking. She voiced her longing for her home and her fervent desire to return there as swiftly as possible. She even says, ‘Record my story and let the entire world hear it.’”

The experiences gained and the practical techniques honed during the initial year of the conflict were documented by Lutsenko and her colleagues from the All-Ukrainian Art Therapy Association, ultimately culminating in the publication titled ‘Art Therapy for Children in Times of War’.

Gershuni emphasises that Ukraine is going through a phase where healers, especially mental health professionals, also need support to cope with symptoms of burnout and exhaustion. So, HTWB launched the 'Helping Healers Heal' or the 3H programme. “With numerous atrocities taking place in Ukraine, a significant number of health care providers had left, creating a gap in mental health support,” explained Gershuni. “To address this, we invited psychologists and experts in psychiatry from the US to conduct webinars, focusing on addressing mental health issues caused by war. Our primary focus was on guiding Ukrainian psychologists and mental health providers in treating their clients and dealing with the challenges they faced. However, it soon became evident that these professionals needed support themselves, leading us to initiate a mental health support programme specifically for them.”

Gershuni's team with Geeks Without Frontiers, an NGO, took significant action to address the shortage of medics by providing fully equipped containers for training young nurses, midwives and medical assistants. These containers served as classrooms, equipped with laptops, tables, chairs and a generator for uninterrupted study sessions. This simple yet crucial initiative allowed students to continue their education and contribute to the much-needed health care workforce in the country during war.

Gershuni and Shchebet also played a major role in the development of a medical chatbot released by HTWB. “We created this chatbot to help teach critical medical skills to frontline combat medics, clinicians and first responders when treating and transporting war casualties,” says HTWB founder Jarone Lee.

Kumar emphasises that in addition to trauma care expertise, medics working in frontline field hospitals must possess an understanding of war mechanics, including the trajectories of projectiles and artillery. “They need to know how far bullets can reach and which type of protection is more effective in different scenarios,” he says. “Knowledge about mine clearance is also essential, as these areas often have minefields that must be safely navigated. Operating in such environments demands discipline to avoid crossing dangerous lines. There is much to learn and understand to ensure effective and safe operations in these challenging circumstances.”

Should healers take sides in a war?

Global humanitarian projects like Project HOPE and volunteer medics such as Kumar adhere to a strict policy of not taking sides while providing aid in war zones. Therefore, their services are exclusively dedicated to civilians and not combatants.

However, PFVMH's values are different, as the organisation has a clear allegiance to Ukraine. In the early days of the war, a hyper-nationalistic outburst from Druzenko on the channel Ukraine-24 caused a major controversy. He stated that he had instructed his doctors to “castrate” Russian prisoners of war. The statement received international condemnation, and Druzenko apologised the same day. “It was under immense emotional strain [that] I made that regrettable statement,” he tells THE WEEK. “I was shocked by the brutality of the Russian soldiers invading the suburbs of Kyiv, our ambulances were facing constant challenges and we were barely getting one or two hours of sleep per day. At that time, my wife [Svitlana Druzenko, a paediatric traumatologist], who leads our medical team on the frontline, and I received extremely brutal letters, emails and messages. And, I made an emotional outburst. I never ordered my team to carry out any such actions, and my statement was not true.”

That controversial episode, however, prompted Druzenko to place even greater emphasis on how his medics behave when encountering Russian prisoners of war. “We conducted an examination, and I am proud to say that our medics treated them adhering to international standards for handling prisoners of war, despite the horrors Russians had brought upon our land,” he says. He mentioned that his team treated a Russian prisoner of war just two months ago near Donetsk.

There is a saying that crisis is a great teacher. Professionals like Gershuni and Druzenko attest that the war has caused the Ukrainian medical field to adapt, innovate and evolve. “In May, I attended a nursing conference in the western part of Ukraine, that focused on clinical medicine during the war, and psychological and physical rehabilitation,” recalled Gershuni. “One striking observation was how exceptionally well-trained Ukrainian health care professionals were. Their experience in dealing with extreme trauma makes them highly valuable in training others. Many have had experience working from field hospitals or tents, under challenging conditions.”

War also taught them to innovate and collaborate. “The war environment provided doctors with a wider scope for manoeuvring and taking risks,” says Druzenko. “We learned to utilise sophisticated equipment creatively, like the MOVES CLC (closed loop communication) reanimation unit, originally designed for NATO special forces, which we used efficiently on stabilisation points, even impressing the manufacturers. This level of innovation and collaboration reminds me of the flourishing of medicine and the emergence of famous Ukrainian doctors like Alexander Shalimov after World War II. I believe that after the war, Ukraine’s medical field will thrive, given the right legal framework, as we will have hundreds, if not thousands, of doctors with unique experiences and expertise.”

interview-with-neurologist-at-mayo-clinic-dr-vijay-k-ramanan

Sat Jul 29 16:14:17 IST 2023

Dementia breeds dread, according to a 2014 survey in the UK. When around 500 adults aged over 50 were asked which condition they feared the most, 68 per cent said dementia, followed by cancer (9.44 per cent) and heart disease (3.88 per cent). It is not the fear of the unknown, for there are no surprises on how it will end―doctors and caregivers of patients with dementia fight a losing battle and are aware of it. It is the fear of losing the very essence that makes you a person, long before death shows up. But there is hope, according to Dr Vijay K. Ramanan, neurologist, Mayo Clinic in the US.

“As a field, we have come a long way in our understanding of the disease, but there is more work yet to be done,” he tells THE WEEK. “I think there are many reasons to be optimistic about having better options for diagnosis and treatment over the years ahead.” Ramanan, whose focus includes diagnosis of and research into screening mechanisms and novel treatment targets for Alzheimer’s, Lewy body dementia and related disorders, talks about how recent research will help shape treatment and diagnosis of the disease, and whether a lack of cure frustrates him as a doctor. Excerpts:

The US Food and Drug Administration recently approved the use of lecanemab for the treatment of Alzheimer’s disease. How does it help in slowing down the progression of the disease?

Amyloid-beta plaque buildup in the brain (between neurons that disrupts cell function) is one factor in the development of Alzheimer’s disease. The aim of lecanemab is to reduce the burden of amyloid plaques in the brain. A recent placebo-controlled clinical trial showed that lecanemab treatment modestly slowed the progression of cognitive decline in patients diagnosed with early symptomatic stages of Alzheimer’s disease who had evidence of elevated amyloid plaque burden. Treatment also included potential side effects, which will require thoughtful selection of patients appropriate for the drug, as well as intensive safety monitoring.

A recent report said that Alzheimer’s could be caused by an infection. What makes specific viruses and bacteria like HSV-1 (herpes) and Chlamydia pneumoniae capable of triggering Alzheimer’s? And, can an antiviral really help against dementia?

There is no high-quality evidence for antiviral or other anti-infectious drugs as treatments for Alzheimer’s disease. Research suggests that immune system function in the brain may play a role in the disease, but additional study is needed to understand this better and any impact on treatment.

For years, beta-amyloid was seen as the villain, but it has been found that amyloids have antimicrobial properties and actually protect the brain from infections. Will that in any way change the current treatment’s focus?

It’s hard to ignore amyloid as a factor in Alzheimer’s disease, particularly given what is known about some of the rare genetic causes of the disease, which involve mutations in genes central to amyloid protein processing. However, Alzheimer’s is a complex disease that likely has multiple underlying roots, and this may in the future require combination treatment approaches in some patients to address those different mechanisms.

How has recent research and breakthrough helped in our understanding of dementia and Alzheimer’s in particular?

The clinical trial results for lecanemab and donanemab (an antibody drug said to slow down cognitive decline in Alzheimer’s patients) represent a step forward in treatment options, and good news for patients overall. Because of how complex those drugs are, neurology practices will be challenged to adapt their infrastructure and workflows, and those adaptations may have other downstream benefits for the future when hopefully additional treatment strategies are possibilities. There is also ongoing research on biomarkers, which may in the coming years help with efficient and early screening through blood tests paired with imaging and other assessments.

Is there anything specific that a person in early stages of dementia can do to slow down its progression?

Having an accurate diagnosis is the first step. This is particularly important as some of the medications that can modestly help with cognitive symptoms in certain diseases may yield no help or even some harm if a different diagnosis is present. Healthy lifestyle habits are also important, including regular physical exercise, remaining socially and mentally active, getting quality sleep, eating a healthy and balanced diet, and managing other medical conditions that can impact the brain’s health, such as hypertension and diabetes.

Can a person with a family history of dementia lower the risk of getting it?

A person’s family history influences risk, but typically this influence is modest and mixed with other factors. Regardless, maintaining healthy lifestyle habits on a consistent basis can help to minimise the risk of cognitive decline later in life.

Dementia, especially Alzheimer’s, is usually associated with ageing. But there are cases where the onset is much earlier. Is it down to the genes in those cases?

Most cases of Alzheimer’s and related diseases are due to a mixture of genetic, lifestyle and environmental factors. We know some, but not all, of these risk factors. In some patients―more likely when onset is very early―the disease is caused by a gene mutation. However, this is relatively rare overall, and many patients can develop Alzheimer’s dementia and have no specific genetic cause implicated. In those cases, it may be that other genes (including some we don’t yet know about) are involved along with non-genetic factors.

While genes do play a role, does gender?

There is a rapidly growing literature on sex and gender differences in Alzheimer’s and related diseases (women are at a greater risk). More work is needed to understand the drivers of these differences, including the impacts of social, cultural and economic factors.

The elderly are advised to stay active and be social to delay or ward off the onset of dementia. In that sense, do you think the pandemic-induced lockdown could have led to an increase in cases?

Social and physical engagement are clearly important pieces of supporting brain health, but as with other factors their effects are likely nuanced. There may be some instances where life rhythm changes, such as diminished social and physical activity, contribute to unmasking of cognitive symptoms, which were either previously present in milder form or which would have revealed themselves slightly later.

While there is a lot of research happening, a cure seems far away. Is our understanding of Alzheimer’s still limited?

Alzheimer’s disease is at the same time extremely common, very devastating and exceptionally complex. As a field, we have come a long way in our understanding of the disease, but there is more work yet to be done. I think there are many reasons to be optimistic about having better options for diagnosis and treatment over the years ahead.

Does it frustrate you at times that there is no cure yet?

The goal is to help patients with neurological disease, using all available and appropriate tools to optimise their care. For our patients, additional treatment options cannot come too soon. However, in the interim, management does not have to be an “all or nothing” endeavour.

What is the one advice for patients and caregivers that you swear by?

When diagnosed with a progressive disease, it is natural to think about the future or look towards experiences of others. However, sometimes fears and stigma about Alzheimer’s disease outpace reality, particularly for a disease that is highly individualised. I encourage my patients not to let a diagnosis own their day-to-day lives in the present. Once a management plan is in place, returning the focus to where it would otherwise be―leading a high-quality life and making adaptations where needed―can be helpful.

the-lonely-journey-of-dementia-caregivers

Sat Jul 29 17:19:35 IST 2023

THE BEGINNING

Halwa used to be the magic word in Bina Berry’s household. Her mother Raj would make it at the drop of a hat—when the weather changed, when there was an auspicious occasion or celebration, and most of all, when her dad, Ram, craved it. One day Raj made it for him, even though it was a hot summer afternoon and he did not really feel like having it. To appease Raj, Ram took a spoonful, yet it did not taste like halwa. He asked her what she had put in it. She could not remember. “Something,” she mumbled. “Do you want me to eat this and die?” he asked her angrily. “I have no time. I am leaving and I am not going to eat this.” When he returned two hours later, his wife of 55 years was sitting on the sofa and crying.

That was the beginning of Raj’s dementia, a condition neither Bina nor her father was much aware of. It would slowly eat her from the inside. According to the WHO, dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person’s ability to maintain their activities of daily living. Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal dementia account for 90 per cent of all dementia. Alzheimer’s is the most common. An estimated 8.8 million Indians older than 60 years have dementia, as per a report published last year in the Alzheimer’s & Dementia journal. Here, we don’t have the resources or the personnel required to deal with such a huge disease burden. Take memory clinics, for example. In several parts of the world, memory clinics—or centres with a multidisciplinary team consisting of specialists like psychiatrists or neurologists as well as nurses, social workers and volunteers—have been shown to significantly improve dementia diagnosis and management. In India, very few memory clinics are run by government hospitals. In 2010, there was one clinic for 37,000 people. These clinics are also “sporadic and unplanned”, and there are no regulations, guidelines or third-party assessment to gauge their quality. It is estimated that there are only 20 daycare centres and 30 full-time residential centres that cater to the needs of people with dementia across India, and they are mostly concentrated around major cities, states a 2019 report in the Indian Journal of Psychological Medicine.

“There are many old age homes, but few dementia centres here,” says Mercy Antony, who runs the St. Theresa's Dementia Care Home in Kochi, Kerala. “We found it difficult to find a space to open this home. Even when we were willing to pay, landowners were unwilling to give the space to house dementia patients, who some believe are mad.” There are music, games, grooming sessions, prayers and exercises for those who live in St. Theresa's. They are given wholesome meals, with chicken, fish and eggs included. Doctors visit twice a month. The home was maintained well, with clean floors, tidy rooms and nets on the windows. However, there did not seem to be any prescribed set of rules and regulations that were followed. “Health inspectors do visit regularly to ensure cleanliness and safety,” said Antony.

There is also a dire shortage of specialists to treat dementia patients. “A neuropsychological evaluation to diagnose dementia is a specialty,” says Dr Robert Mathew, professor of neurology and chairman of the Kerala chapter of the Alzheimer’s and Related Disorders Society of India (ARDSI). “A neuropsychologist is someone who has worked for two years in dementia care after a post-doctorate in psychology. India has very few of them. Otherwise, a physician or neurologist clinically evaluates the patient. A test which should take two hours is often done in 10 minutes.”

THE PAIN

Geeta Iyer’s father was a self-made man who, in many ways, was ahead of his time. He had three daughters and he did not treat them any differently than sons. He was not able to complete his studies, so he ensured his children did. Geeta worked as a consultant in the US for many years. One of her sisters is a doctor, and the other completed her PhD. When her mother left to the US for a year while Geeta was still in school, it was her father who cooked her meals, ironed her clothes and took care of her. Whenever she had an exam, her father would be the first to wake up and make her coffee.

Then, in 2017, life changed for the family when he started showing early signs of dementia. They were in the US then. In the beginning, it was small things like forgetting the way to the bathroom or imagining that he was in a train when he was not. Then he started forgetting faces—even that of his wife or grandson.

“He was not able to articulate it, but he was aware that something was changing in him,” says Geeta. “He was a very ritualistic man, the first to wake up, bathe and pray. He was forgetting some of the prayers which he had chanted since his teens, and he would feel very sad about it. So, I would play those prayers on YouTube and he would chant along.”

Because she knew she would need full-time help to take care of her father, she moved from the US to Mumbai in 2018. In the beginning, the move was challenging. “The health care system is very structured in the US,” she says. “There are organisations like Dementia Action Alliance run by dementia patients themselves. Here, there is nothing like that. I found even the support groups for caregivers to be more organised in the US. There was more empathy. They were more inclusive with a moderator ensuring everyone got a chance to speak. Even the hospitals here are not dementia friendly. There is no wheelchair access. It is very difficult to navigate, with a lot of clutter and furniture scattered all around.”

Another problem is that most doctors in India are not sensitised to the specific challenges posed by dementia. “My experience with doctors has been abrasive,” says Sanjiv Pai, a teacher who took care of his mother with dementia until her death in January. “They said contradictory things and could not explain matters logically. One of them told me that this was normal ageing. It was only later I came to know that there are different types of dementia, and some can be treated partially with medicines. If caregivers are given this information, they can make more effective decisions. There are very few doctors who are genuinely empathetic.”

This is corroborated by the Dementia in India report of 2020, brought out by the ARDSI. “Many health care providers are reluctant to make a diagnosis of dementia as they think they have nothing to offer once the diagnosis is made,” it states. “This scenario should change. Health care providers, especially those who have had no specialist training in psychiatry or neurology, often do not recognise the important role of non-pharmacological interventions in dementia care. They often do not initiate simple basic interventions like provision of information about dementia and support for caregivers. These services are simple, basic and should be given to all.”

According to Alzheimer’s Disease International (ADI), 32 countries have adopted a plan on dementia. India has not. With the exception of Kerala, the government does not have a medical care policy for people suffering from dementia. India spends only 1.2 per cent of its GDP on health care. Only a small fraction of this is allocated to diseases affecting the elderly. According to the Dementia in India report, the estimated household costs of caring for a person with dementia is between Rs29,272 and Rs95,208 per household per year in rural areas, and between Rs65,755 and Rs2,91,933 in urban areas. When asked whether there are any financial schemes specifically for caregivers of dementia patients, Mathew asks, “The government has not even recognised dementia, so how can there be any financial schemes?”

THE GUILT

Imagination. What can be the greatest asset for a creative person can be the greatest liability for a dementia patient. Their mind is constantly playing tricks on them. When the line between the real and the imaginary becomes blurred, you no longer have control over your thoughts. For Bina’s mother Raj, it came in the form of hallucinations.

“Look, they are coming,” she screamed one day. “They’ll kill you… us… all of us.” That evening, Raj spoke at length about the horror of partition, which she had experienced as a young woman fleeing Pakistan with her family. Many times, they had to restrain her physically when she would shriek and scream. Bina describes in her book, Vismrit, how she would hold her mother’s hands to keep her from thrashing around. Now, when she looks back, she wishes she had dealt with those episodes better. Where force did not work, coaxing might have.

“Today I am left with a certain guilt that I could have done more for her,” Bina tells THE WEEK. “I could have given her more time. I was running a PR agency then. I could have closed my business earlier than I did. Had I looked after myself better or gone for counselling, I may have been able to handle her better. But there was no one to guide me. Every day was a surprise. The doctors were no help at all. They only prescribed medicines and did not say anything about counselling or caregiving.”

Then there is the stress of taking care of a dementia patient—the sleeplessness, the long hours, the shortage of trained professionals to help you, the social isolation, the financial burden…. The 10/66 dementia study found that between 40 per cent and 72 per cent of primary caregivers reported high levels of psychological morbidity. “Even though there was a paid caregiver to take care of my mother-in-law who had dementia, every day there was some problem or the other,” says Sonal Desai Kapur from Mumbai. “They know how to give nursing care, but they don’t know how to handle behavioural changes. My mother-in-law would forget that she had eaten, refuse to have baths or spit out her medicines. Even though there are many people like me in the country, we are alone in our journey. Because you cannot step out of the house, you lose your social contacts. One thing I realised is that if you talk to someone who has not handled a dementia patient in their immediate family, they just don’t understand the challenges. If they ask me how she is doing, and I try to explain, 99 per cent of the time, the response I get is, ‘But that happens to everyone in old age.’ Awareness does not come unless you see it for yourself. I also realised that even though dementia patients lose their ability to speak and express themselves, their feelings are intact. So you should treat them accordingly, with compassion and empathy. If there are children in the house, involve them in the caring process. Let them interact and spend time with them.”

Most of the primary caregivers are learning on the go. There are very few skilling programmes in the country. “Love is not the same as caregiving skills,” says someone working in dementia advocacy, who did not want to be named. “Families come away confused because nobody tells them that caring for a dementia patient requires a different set of skills than what is required in caring for a normal senior.”

THE END

Jaspreet Kaur Chakkal’s parents lived on a street in Punjab where, due to militancy, there was much bloodshed in the 1980s and 1990s. Her mother’s father left the British police and joined the freedom struggle. Their income dried up, and there were days when her grandmother had to ask neighbours for flour to feed her children. Being the eldest, Jaspreet's mother started working at a very young age to support the family. Jaspreet’s father, on the other hand, was a sniper in the Dras sector near Kargil. He sent whatever money he saved back home to help his father educate his siblings. After Operation Blue Star in 1984, when Jaspreet was a little girl, her parents used to bundle her in a quilt and hide her under the bed so that she would not hear the gunshots. There was no gate outside their home. It was just an open courtyard. After heavy shelling, she remembers using the empty shells lying around as glasses for her dolls. At the age of eight, to keep her safe, her parents sent her to her uncle’s house in the city. Since then, she saw them only for a few days every summer vacation or Diwali. It was only in the last eight years of her parents’ lives, when her father was diagnosed with Parkinson’s and her mother with Alzheimer's, and she took them to Noida to live with her, that she really came to build a relationship with them.

“Only when I started taking care of them did I start seeing them as human beings and not just as parents,” she says. “I tried to understand what their lives would have been like. My father, for example, would hallucinate about the violence and bloodshed during the time of militancy. He would imagine he saw people with guns sitting on the parapet behind the curtain. To allay him, I would make five to seven cups of coffee and set it on the dining table. ‘Let’s invite them in for coffee,’ I would tell him. My mother would imagine seeing tortoises in the room, and I would do this elaborate act where I would pretend to jump over them in order to get to her.”

Jaspreet was also certain of one thing: She wanted her parents to have a dignified end, and so the time between life and death had to be spent as joyously as possible. She wanted to rid them of the fear of death, so it became very normal in their home to talk and even joke about it. Though her parents were losing their cognitive skills, it almost became a daily conversation. Once, she asked her mom whether she wanted to be electrocuted or cremated after her death. Her mother said she did not want electrocution because she could not bear to have current pass through her. She and her dad laughed, but her mom did not. It was a very serious issue for her. Another time, her dad joked that he wanted whisky served at his funeral.

“In our culture, the first thing we are taught is that we are going to die one day,” she says. “Despite knowing that, we do everything in the world except talk about it. Sometimes my parents and I would be sitting together and enjoying our evening tea, and I would find myself wondering if they would still be alive when I returned from office the next day. In a way, we are never prepared to lose our parents. Yet, my purpose in taking care of them was not to extend their lives, but to celebrate every moment till the end.”

Palliative care is a relatively new concept in India, and it is usually reserved for cancer. But there is an important place for it in dementia as well. Dementia patients often cannot communicate what they want and can get disoriented with frequent hospitalisation. Things like tube feeding can be traumatising. This is where an advanced directive, where the dementia patient can tell in advance what kind of end they want, is of great value. Unfortunately, dementia in India is hardly ever diagnosed in the early stages, where the patients get time to articulate their wishes, write a will, make a treatment plan, or set their legal and financial affairs in order.

“Early diagnosis is very crucial, because if you pick up the symptoms within one or two years, then you can start the treatment,” says Dr Mathew Varghese, senior professor of psychiatry and former head of the department of psychiatry at NIMHANS, Bengaluru. “You cannot reverse the condition, but there are some medicines and psychological interventions like cognitive retraining to slow down its progression. You will also be able to educate the patient and family on what to expect, what to do, and how to manage dementia. According to the ADI, only about 10 per cent of the dementia cases are picked up early in our country. It is a little better in the west. But mostly when people start showing symptoms of dementia, family members attribute it to natural ageing.”

THE JOY

An entry from Geeta’s Facebook blog from December 2019, when her father with dementia was still alive:

Appa: Where does your dad work?

Me: You are my dad. I am Geeta.

Appa: But Geeta is in the US.

Me: We were all together in Farmington Hills. We came back together.

Appa: Are you going to school?

Me: No, I am here to take care of you.

Appa: Ayyo, thank you.

Me: It’s ok. You have done a lot for us.

Appa smiles.

Leela [helper] brings him juice. As soon as she pours the first sip in his mouth, his expression changes to one of ecstasy.

Appa: Amazing taste.

I laugh and ask: Is it good?

Appa: First class.

He tells Leela to give me some.

“I wish I had recorded that moment,” writes Geeta in her blog. “It was so adorable. Feel happy that he still has these moments of joy.”

Dementia can be a heart-breaking and frustrating journey, both for the patients and the caregivers. But maybe, it does not have to be a death sentence. Maybe it is possible to enjoy bits and pieces of the journey, and cherish those moments when they are themselves, and even when they are not. “I refused to consider my parents as people who had nothing left to live for,” says Jaspreet. Sometimes joy is sweeter when it comes from the depths of pain.

excerpts-from-the-book-my-father-s-brain-by-dr-sandeep-jauhar

Sat Jul 29 16:02:21 IST 2023

My Father’s Brain by Dr Sandeep Jauhar is all heart. And, it has nothing to do with the fact that he is a cardiologist. The book―his fourth―is a deeply affecting and heartbreaking memoir, detailing his father’s descent into Alzheimer’s and how he and his family came to terms with it―grudgingly at first and with grace in the end. Jauhar’s father, Prem, was a world-class plant geneticist who started losing his mind and eventually himself in the last seven years of his life. To see a loved one become a shadow of their former self and care for them as they decline is not easy. It comes with denial, frustration, resentment, guilt, helplessness and more. And, Jauhar lays bare all these emotions as they are―raw and unvarnished. His writing is honest, and brave. The book is as informative as it is emotional. Even as he struggles to cope with his father’s disease, he delves into the science behind it. The Jauhars’ experience is unique yet universal―there are more than 55 million people with dementia the world over, as per the World Health Organization, with 60 per cent from middle- and low-income countries. As our lifespan increases, so will the cases. That means most of us either know or will know people with dementia. This book gives a glimpse of what that really means for your loved one and you. Excerpts:

One day during my parents’ first winter on Long Island, a few weeks after the visit to Dr. Gordon, my father and I went for a walk. The sun was shining brightly that day, fluorescing off the white drifts to either side of us. The snow had come early that year; it was now melting into a kind of grayish honeycomb along the footpath. Cars in driveways were blanketed in frost. Pellets of road salt crackled under our shoes.

“You tripped here, remember?” I said, pointing to where the sidewalk was jutting up.

My father nodded. He remained a handsome man, with his meticulously trimmed salt-and-pepper mustache, appearing twenty years younger than his age. That afternoon he was wearing a red sweater under his bomber jacket. A green cap with earmuffs covered his head. “I was running,” he recalled of the brief stumble that fortunately had not resulted in injury. (He had been walking.) “It was dark.”

“You must not go out when it’s dark,” I admonished. “I’ve told you before.”

“I should go with Pia,” he said, laughing. “When will you bring her?”

“I brought her last weekend.”

“No,” he cried.

“I did.”

“Well, you should bring her more often. She’s a lovely child.”

I told him I would. I didn’t have the heart to tell him that his beloved granddaughter rarely wanted to visit anymore.

He stopped to blow his nose with his fingers, leaving a string of snot on the wet snow. “Come on, let’s go back,” he said. We had walked about a block.

“You don’t want to walk some more?”

“No, I’m tired,” he said, turning around. Then, as if on cue, the tape rewound. “So, when will you bring Pia?”

★★★

As our conversation during that walk revealed, my father’s most troubling symptom that winter was short-term memory loss. But, I began to wonder, what exactly is memory? How is it encoded in the brain, and what causes it to deteriorate in dementia?

These weren’t just academic questions to me. As a doctor, but also as my father’s son, I felt compelled to explore these questions in part by digging into the science of brain degeneration. Understanding my father’s condition at a deeper level, I hoped, would help me make sense of what he was going through, and what we as a family might expect in the months and years ahead. At the same time, I believed that confronting his memory loss would help me cope with the emotional and practical dilemmas that arise when someone you love becomes a different sort of person. I would investigate broadly, from deep questions such as what makes us who we are and how to honor my father’s wishes for his future self to more specific matters such as the utility of medications and the existence of novel therapies and caregiving strategies. Knowledge, I believed, would give me insight, a deeper sense of the situation, but also empathy (though this didn’t always work out as planned). In the coming years, it would be when my father’s behavior seemed random, incomprehensible, with no purpose or blueprint, that I was most frustrated as a caregiver. Thus, acquiring knowledge of the science and history of his condition not only illuminated his needs but allowed me to take better care of myself, too.

★★★

At the podium, my father and the chancellor shook hands, and my father graciously received an engraved plaque. My hand on his shoulder, I then guided him back to our table, appreciating the grateful nods of staff and other patrons along the way. I sat down with a huge sigh of relief. I had been so worried about how my father would handle the whole affair; fortunately it had passed without any major mishaps.

But then, with his part of the ceremony over, my father decided it was time to leave. It was almost two o’clock, and he wanted to go home to take a nap.

“We’ll leave in a few minutes,” I whispered. “Just let them finish.”

“I am tired, Sandeep,” he said loudly as another name was called. “I did not want to come for so long.”

“Please, Dad,” I said under my breath. “It doesn’t look good if we get up now. We’ll leave in a few minutes when it’s all over.”

He thought about this for a moment. By now people were giving us sideways glances. “Then I will take a taxi,” he said, making to get up.

I tugged at the sleeve of his jacket. “Please, Dad,” I hissed through clenched teeth. “I work here. Just give it a few more minutes.” Then, my chest filling with contempt for him, I said, “Where are you going to get a taxi? You don’t even know where you are.”

He stared at me, perhaps considering what I had just said, or maybe because he felt humiliated. I am not sure. Then he sat down as it dawned on him that his was not a viable plan.

As the ceremony continued, I looked blankly across the room, shaken from having spoken to my father so bluntly (and in public). I noticed a line of Mylar balloons tied to a banister behind the podium, and a short snippet of a memory began to play in my mind. I am seven years old. There is my father, bursting through the front door of our apartment in New Delhi, carrying a helium balloon. Before he can even sit down, I grab the balloon, run outside to the front of our flat, and let it go. It quickly sails up out of my reach as I jump for it in panic. With his long arms outstretched, my father whisks the ribbon out of the air before it floats away and hands it back to me.

Even as the flickering movie played, I heard him say again, “Let’s go, Sandeep, I am tired.” No remembrance or resentment: the Etch A Sketch had already been wiped clean. Again I tried to negotiate with him―and I did manage to keep him sitting for a few more minutes―but there was no denying him that afternoon. “Come on, Dad,” I said, finally standing up, trying to avoid the sympathetic glances of the patrician grandmother sitting next to us. “Let’s go home.” We left through a side exit.

We did not speak to each other on the way home. When I pulled into his driveway, the sun was shining again. Tiny rain puddles now reflected a bright blue sky.

“Thank you for coming, Sanja,” he said, opening the car door. I could tell he knew that I was still upset.

“It was nothing, Dad,” I muttered, just wanting to leave.

“No, it was a lot,” he said. “I am glad you took me. You are a good son.”

I felt a warm flush. Despite the years apart, a kind word from him still made me feel good. “I’ll come again tomorrow,” I said.

“What time?”

“I don’t know. After work. Maybe we can go for a coffee.”

He stepped out of the car in his gray suit, looking every bit the academic he had once been. “I am not fond of coffee,” he said, before closing the door. “But I am fond of seeing you.”

★★★

Human brains are modular. Just as large companies build regional plants to minimize transportation costs, the brain has evolved a collection of specialized units to serve distinct functions such as vision, language, spatial reasoning, and, of course, memory.

There, in a curved ridge of tissue in this man’s medial temporal lobe, was a hippocampus, composed of several cell layers folded together like a cinnamon roll. It was withered and atrophic―at least so we were told; I had not seen enough normal ones to be able to tell for myself. As neuroscientists learned from Henry Molaison, the hippocampus and its surrounding structures are responsible for the encoding of long-term memories. Damage to these structures in the early stages of Alzheimer’s disease explains the anterograde amnesia―the inability to form new memories―that is a hallmark of the disorder (and that my father was now exhibiting). The predominant signaling chemical in the hippocampus is called acetylcholine, which is why pro-acetylcholine drugs such as Aricept are used to treat the failing memories of Alzheimer’s patients (though with only modest effect).

Hardly a centimeter from the hippocampus was an almond-shaped structure called the amygdala, which regulates emotional responses like fear. The fact that fear and memory structures reside so close to one another is no accident: we must remember what should be feared to ensure our safety and survival. The hippocampus actually goes into a hyperactive state after extreme fear kicks in, rendering certain memories―the topography of a mole on an assailant’s cheek, for example―in vivid detail, though other information, such as the layout of the room where an attack took place, may be lost. Such spotty encoding must be kept in mind when we are faced with the often-incomplete recollections of victims of violent crime.

★★★

Of course I would still acknowledge his remarks, but I rarely responded to or valued what he said―and then only if the remarks had the sheen of normalcy, like his comments on the buffoonery of a certain Republican candidate for president in 2016. If they were strange or idiosyncratic, they―meaning he―would be ignored. He would tell me old family stories, but I would find them unfunny or irrelevant and chide him or hurry him along. No doubt I made him feel worse, lonelier than he already was―not on purpose, of course, but it hardly mattered. Once he was labeled as having a brain disease―a label corroborated by my unforgiving interpretations of his conversation―he became to me a minor character in our family, a miniaturized version of his former self, isolated and condemned to ever-shrinking boundaries, as I stared sadly at him from outside the cage.

A similar thing happened with my mother. Once she started hallucinating―a consequence of her Parkinson’s (or perhaps the drugs she was taking to treat it)―my siblings and I were inclined to interpret almost all her actions and feelings through the prism of her disease. The social psychologist Tom Kitwood has termed such behavior “malignant social psychology.” It is a form of depersonalization. Even my mother’s being sad or withdrawn because she could no longer walk properly or because my father was continually fighting with her aides was construed by us (and by her doctors) as evidence of failing neurological processes, not as a reasonable human response to difficult and frustrating circumstances. During those years I was writing a book about the heart in which a central theme was the detrimental effects of psychosocial stress on human health. Yet when it came to my parents, my thinking regressed to a model of disease in which their conditions were purely consequences of cellular pathology. Our parents were constrained and marginalized not just by their diseases but also by our response to them.

Excerpted with permission from Penguin Random House.

My Father’s Brain: Understanding Life in the Shadow of Alzheimer’s

By Dr Sandeep Jauhar

Published by Penguin Random House

Price Rs699; pages 356

rise-in-type-2-diabetes-among-children-in-india

Sat Jul 01 18:44:02 IST 2023

Sumaiyya Shaikh was only nine when sweetness as she knew it was cut off from her life. A resident of Malad in Mumbai, she was diagnosed with type 2 diabetes. That diagnosis continues to haunt the 13-year-old even today. “It is frustrating and depressing. I have been asked to eat vegetables all the time. Only a fistful of rice is allowed. I feel so hungry, but cannot munch on anything of my choice because the doctor says everything spikes the sugars. I am a foodie. I love to binge on snacks, noodles, pasta and non-vegetarian food,” Shaikh tells THE WEEK. It is just two days before her birthday, and the usually cheerful and talkative teenager is distraught she cannot even eat cake on her birthday. “It has become such a nightmare,” she rues. Her mother, Nafisa, says she has lost count of the number of medicines Shaikh has consumed to keep her weight in check, because that is where it all began. Shaikh weighs about 60kg.

And, it was her weight that brought her to Dr Akanksha Parikh, paediatric endocrinologist at Kokilaben Dhirubhai Ambani hospital, four years ago. “She had come to me with obesity, and in the process got diagnosed with type 2 diabetes,” says Parikh. “In her case, both her parents are diabetic. If the parents are diabetic, the child will get it 10 to 15 years earlier than the age at which the parents got it. That explains the early onset of diabetes [in Shaikh].”

Shaikh was the youngest patient with type 2 diabetes that Parikh had ever seen. Type 2 diabetes is usually seen in adults and not in children. Till recently, children used to be diagnosed with only type 1 diabetes. In type 1 diabetes, the pancreas does not make insulin―the hormone that helps cells absorb glucose from blood―as the immune system attacks the insulin-making islet cells in the pancreas; whereas in type 2 diabetes, the pancreas makes less insulin.

Shaikh was started on insulin therapy initially, and once her glucose control improved she was put on oral medication. “She did achieve good control, but soon her lifestyle went for a toss,” says Parikh. “Children this young are not able to sustain lifestyle discipline for a long period of time. The situation worsened so much that we started her on another anti-diabetic medication (liraglutide) in the form of a daily injection to control the blood sugar.” Liraglutide was recently approved by the Food and Drug Administration for use in children. It helps in increasing insulin levels post meals. Shaikh, says Parikh, was counselled on proper diet, “but her levels of physical activity did not improve despite the counselling”.

Likewise, Harshit Vadher, 17, had to be given insulin injections to control his blood sugar levels. The Virar resident dreams of being a doctor and is preparing for NEET (National Eligibility cum Entrance Test). “The stress of cracking a competitive exam like NEET is so high that his sugars often fluctuate,” says his mother Mayuri. “There is no time for anything except studies and he invariably ends up bingeing on snacks at home.” Vadher’s diagnosis came as a shock to the family as no one in the family is diabetic, adds Mayuri. “His physical activity had dramatically reduced as studies had taken priority,” she says. “But who knew that being studious would invite diabetes? He had sudden weight loss of around 15kg in a short span, which led to the diagnosis.” Until his readings improve, Vadher will have to continue taking the liraglutide injections. He also has diet restrictions. “At times, it breaks my heart to see him burdened with a million restrictions relating to food intake,” says Mayuri. “He is 85kg now. Diet, as prescribed by the dietician, is highly controlled, which means only two chapatis and overall limited carbs. Now, his body has gotten used to the limited meals. For snacking, I give him fox nuts, dry fruits, fruits and salads, but no sugary sweets. He has plenty of self-control when it comes to food, but no time for exercise.”

Doctors across India's major cities agree that there has been a rise in type 2 diabetes among children under 18. “Recent statistics tell us that India houses the second largest number of youth below 20 years with type 2 diabetes,” says Parikh. “The most common age is when they are peripubertal, that is 10 years and above, and from 15 to 19 years because puberty itself is a physiological state of insulin resistance. So, during puberty, they are at a higher risk of glucose intolerance. At the time of diagnosis, HbA1c of some children can be as high as 12 to 16. Anything more than 6.5 is considered to be diabetic range. The fasting blood sugar in these children can go over 200.”

In Vadher’s case, his sugars had suddenly shot up to 600, and he had to be hospitalised. As this was during Covid-19, it was a challenge to find a bed for him. “He looked absolutely normal but the doctor said that his internal organs would be highly affected if he continued with his Covid-induced lifestyle,” says Mayuri.

A lot of these patients are undiagnosed for long because this is an insidious condition, say doctors. Usually, children come to doctors seeking treatment for some other condition, and that is when diabetes is picked up. “Children come to us with complaints of obesity, excessive thirst, frequent urination and sudden weight loss,” says Parikh. And, obesity is a strong risk factor for type 2 diabetes in children. “The increase in body weight is the major reason why children are getting type 2 diabetes,” says Dr Brij Makkar, obesity specialist and president of Research Society for the Study of Diabetes in India. “Almost every week, I see a child with type 2 diabetes. Kids, aged 10 to 12, first enter the pre-diabetes stage and eventually turn into diabetics in a few years. Their HbA1c levels may not be very high but their sugar levels are abnormal, in the range of 126 plus, which is the cut-off for fasting glucose levels, and the postprandial (after food) glucose levels going up to 200 plus.”

Type 2 diabetes progresses more rapidly and aggressively in children than in adults. While adults may be put on oral medication for 15 to 20 years before their pancreas get tired and they are forced to take insulin injections, insulin dependency happens earlier in children as their pancreas work much more than an adult’s for the same amount of glucose control. While there is a gamut of medicines for adults, there are a limited number of FDA-approved medicines for children because of lack of research. Most medicines that are used are purely on an experimental basis. Also, when children have early onset of diabetes, there is a high risk of complications related to kidneys, heart and eyes as they grow up. “What you would have gotten at 60 or 70 years, you will get at 40 years,” says Parikh.

In its recent report in The Lancet, the Indian Council of Medical Research along with the department of health research and the ministry of health and family welfare referred to diabetes as an epidemic and concluded that the prevalence of diabetes in India is considerably higher than previously estimated. “There are serious implications for the nation, warranting urgent state-specific policies and interventions to arrest the rapidly rising epidemic of metabolic non-communicable diseases in India,” the report reads. While this cross-sectional survey primarily assessed a representative sample of individuals aged 20 years and older, drawn from urban and rural areas, doctors across the country are expressing concern about the “potential epidemic” of type 2 diabetes among children as young as eight to ten years.

Doctors began observing this increase in the number of children with type 2 diabetes just before Covid-19. “Four to five years ago, most children who came with diabetes were either type 1 or had pancreatic diabetes (pancreas experiences damage, affecting its ability to produce insulin),” says Dr Shrinath Shetty, consultant endocrinologist, KMC hospital, Mangaluru. “Of late, we are seeing a sudden spurt of type 2 diabetes in children, which was previously uncommon even in those below 40. We started seeing this increase in numbers just before Covid-19. In fact, we assumed it was type 1 initially, but later realised it was type 2. After Covid-19, the incidence has become worse.”

Dr Sreejith Kumar, who runs a diabetes care centre in Thiruvananthapuram, says he is increasingly seeing young patients with acanthosis nigricans, an abnormal darkening of the skin around the nape, the most common tell-tale sign of insulin resistance. “Many parents mistake it for dirt but it is a sign of diabetes in children who are obese,” says Kumar. He cites the example of a 13-year-old girl with the condition. She weighed 80kg and complained of frequent urination, abnormal thirst and fatigue. The girl also had a family history of diabetes. “Children with a family history of diabetes should be extra careful,” says Kumar. “It is very common for young girls with acanthosis nigricans to show abnormal hair growth, polycystic ovarian disease and irregular menses. Managing their lifestyle is the only solution here.”

Sedentary lifestyle, stress, bingeing on junk food and poor protein intake―all of which lead to obesity―are primary factors for the rise in type 2 diabetes in children, say endocrinologists and diabetologists. “Most kids who came to us used to snack a lot on junk food on an almost daily basis,” says Shetty.

One of his patients is a 13-year-old who came to him when he was 11 and weighed over 90kg. He complained of muscle pain, weakness and frequent urination. His parents initially did not take it seriously, brushing it off as viral fever. “He was brought to the casualty in an unconscious state,” recalls Shetty. “It was found that his sugars had shot up to 500-plus. He was shifted to the ICU and started on insulin infusion.” Even after his condition improved, he continued to be on insulin. “During followup, we realised that his body was producing enough insulin but just that because of bad food intake and a sedentary lifestyle, he had become diabetic, which went unnoticed for a long time,” says Shetty. “He also had weakness in the leg that improved with physiotherapy and cycling. After months of insulin dependence, he was shifted to medication― metformin 500mg―which has been reduced to half a tablet every alternate day. Being a single child, he was pampered. His tantrums were always given in to and he would end up ordering junk food every day. With a shift in dietary habits, he is now at 70kg.”

But is it fair to expect children to lead a disciplined lifestyle with diet control, ask parents. The inability to control cravings, frequent hunger pangs, peer pressure and tempting food make it next to impossible for children to stick to a diet, they say. This results in frustration, irritability and frequent arguments between parents and children. “It all started during the lockdown,” says Swapnali, mother of Mayank, 10, who is an avid footballer and cat lover. “That was the time when my boy also gained weight because there was nothing else to do except sit at home, stay glued to the phone screen and munch.”

Swapnali, a single parent, never thought of checking Mayank’s sugar levels, despite her mother being a diabetic, as he had a normal weight earlier and was active in sports. “A persisting high fever led to the diagnosis and our tryst with diabetes began,” she says. And in came diet and discipline. “Despite trying so hard, at times it is natural to slip, especially when a young child is involved,” says Swapnali. “When his friends have a party downstairs, he enjoys treats without even telling me. At home, in my absence, it is difficult for him to stick to a schedule, and an erratic schedule disrupts the sugar levels. So this is a catch-22 situation we find ourselves in. Though I am lucky that my little boy shows loads of self control, there are times when he gives in to temptation.”

The problem, says Shetty, is that once a patient becomes better, they do not follow up or take it lightly and this is very dangerous as far as diabetes is concerned, especially among children because the counts fluctuate all the time. “What happens in children is sometimes because of the school schedule, their health takes a backseat,” he says. “That is why, we must see children once in three months for sure.”

The youngest type 2 diabetic patient that Dr Lenatha Reddy from Rainbow Children's Hospital, Hyderabad saw was also a ten-year-old. “He was obese and his HbA1c was 7,” she recalls. “With medication, his parents are trying to bring the markers within a normal range.” The boy had come to her before Covid-19. “Post Covid, this has become more alarming, with children getting addicted to mobile phones and staying indoors for two to three years and eating highly processed foods,” she says.

There is also a theory that birth weight has a direct link to being at risk for diabetes later in life, says Reddy. “Babies who are underweight and those who are overweight at birth are at risk of having diabetes when they grow up,” she says. In babies who weigh less than 2.5kg at birth, the weight gain is usually brought about rapidly, which puts them at risk of metabolic complications later on. “The problem is that in our society we tend to normalise obesity in children as healthy,” says Reddy. “But it is only when your BMI is okay for your age and sex that you are actually healthy as a child. Do not feed children excessive calories with the idea of a rapid weight gain because that translates into visceral fat. This is responsible for the onset of diabetes, and Asians are at a higher risk because of our thin-fat phenotype (increased body fat in an individual with normal BMI) as against Caucasians.”Recently, Dr Arun Menon, an endocrinologist at Amrita Institute of Medical Sciences, Kochi, attended to a 20-year-old nursing student with a normal weight who “did not show any alarming symptoms”. She had lost a bit of weight but attributed it to living in a hostel. Her cholesterol was normal and so were other parameters except sugar levels―they were abnormally high. Menon initially thought she had type 1 diabetes, but she turned out to be a lean type 2 diabetic―people who are not obese but have severe insulin resistance. “We can only speculate about endocrine disruptors, food adulteration or other lifestyle-related factors, but the real reason is difficult to pinpoint,” he says.

There is one thing Menon is sure of. “We are all at risk, given the way this epidemic is spreading,” he says. “We are now getting cases on a weekly basis, as against monthly. The spread has increased four to five times in five years.” Another shocking aspect that he observed among children with type 2 diabetes is that very few of them have a family history of the disease. “For those who do, their parents must have gotten this disease in their 50s,” he says. “However, by the next generation, this will [happen] 20 years earlier. I have noticed that at least 40 per cent of patients who come to the hospital for any disease have diabetes. Because this is the very first time we are seeing children this young with diabetes, it remains to be seen how they grow up and grow old. It is scary that these children may go on to face major medical problems by the time they hit their 30s because this is a chronic disease and it might take 15 to 20 years for the disease to manifest. This is only the start of their journey. And it is a huge population, not just a few people.”

Dr Jugal Kishore, who leads the community medicine department at Delhi's Safdarjung hospital, has been visiting schools in New Delhi to look for adolescents with diabetes. “Most of these kids are obese, so much so that their BMIs range between 30 and 40,” says Kishore, who is general secretary of the Indian Association of Adolescent Health. “We find out diabetes only when they undergo checkups for other problems such as pneumonia.”

He cites the example of a school in Bengaluru. “There the prevalence of obesity among children has been increasing rapidly in the last ten years, from 10 per cent to 15 per cent,” he says. “In Delhi, the same is 20 per cent and above. In private schools catering to the upper middle class, it is 25 per cent.”

Children also face stigma in schools. “My teacher asked me not to attend the school picnic because I am diabetic,” says Shaikh, rolling her eyes. “What if something goes wrong with me when I am outdoors?”

Experts say that children should have moderate to vigorous physical activity every day for 45 minutes, “which means they should sweat and their heart rate should go up and they should be breathless while performing the activity,” says Shetty. “When these three things happen together for five days, we say that there is adequate physical activity.”

the-story-of-india-s-youngest-living-organ-donor

Fri Jun 02 18:42:00 IST 2023

Most people open the front door in the morning and see light that often powers their day. But for days together Devananda saw only darkness. It seeped inside her home, and engulfed her family.

The dark days had started last October when her father Pratheesh P.G., 48, was diagnosed with liver cancer. None in their family had heard of decompensated chronic liver disease with hepatocellular carcinoma—the medical name for his condition—nor about non-alcoholic fatty liver which the small businessman was diagnosed with along with the cancer.

Life crashed. Devananda found her father fatigued most hours. Sometimes semi-conscious. And when awake, he struggled to talk. Devananda, 17, froze at fate's harsh twist. But she did not submit.

Still she didn't have a clue what to do in those early numbing days.

As the family struggled to absorb the shocking news, they were advised that an immediate liver transplant was the only option.

Stressed from the shock of seeing the family's breadwinner struggling for life, and stretched thin on the financial front, Devananda and mother Dhanya ran from pillar to post. It seemed time was steadily running out for Pratheesh, and no donor seemed in sight.

“Finding a suitable donor and arranging money for the transplant seemed an impossible task, as one by one the doors closed on us,” said Dhanya.

Pratheesh runs an internet cafe and printing shop in Thrissur, his hometown, about 90km north of Kochi. The shop is on lease, and the only way to arrange the money for surgery was by pledging their house. “He was vehemently against the idea. He used to ask us how we would repay the loan in case something happened to him,” remembered Dhanya.

Finding donors was another battle. When Pratheesh was diagnosed with liver disease, the family was told he perhaps had six months left. “It was very hard to find a donor. A member of our family came forward, but later backed out,” said the daughter.

The last few months of the year were painful. Quite like what they had experienced in October, when Pratheesh and his family came in for consultation at Kochi's Rajagiri Hospital with swelling in both legs, onset of jaundice and fatigue. His illness worsened, with sepsis and encephalopathy, a condition that affects the brain. Further tests revealed that his Model for End-Stage Liver Disease (MELD) Score, from tests to assess liver damage, was high, and that he had cancer.

“Added to liver disease, scans revealed he had a tumour,” said Dr Ramachandran Narayanamenon, the transplant surgeon who treated Pratheesh. “CT and PET scans were conducted. At first, since there was a tumour, the transplant option did not seem viable. Further evaluation of the patient had to be done.”

Pratheesh’s liver condition being poor, doctors had to rule out many treatment options like transcatheter arterial chemoembolisation and stereotactic body radiation therapy to stabilise tumour growth . Since the chances of liver failure were high, bridge therapy (to suppress the tumour) till transplant was also ruled out.

Pratheesh’s blood group was B-ve and not compatible with Dhanya's. The two children, Devananda and Adinath, being minors studying in class 12 and 7, respectively, could not become donors. The next option was to join a long queue, and wait for a match. Because of the tumour, the chances of getting a donor were low. “The cadaver criteria laid down by the state make it difficult to consider a deceased donor for transplant,” said Narayanamenon. “Therefore, immediate family members or relatives are usually relied on as donors, and since there was none in this case, the family was placed in a dire situation.”

“Amid financial woes and difficulties in finding a donor, and with my father’s condition worsening by the day, we knew that we had only limited time to do something to save him. We couldn’t afford to lose him,” said Devananda.

As most doors closed on them and with hope at its lowest, Devananda wondered aloud one day, “I could be the donor, can't I?” Since her blood group was O+ve, she was in the universal donor category. However, one of the major challenges ahead was the law.

“I voluntarily came up with the desire to donate my liver,” she said. “I knew that I am a universal donor and, if everything goes well, I could save him. It was certainly not an easy decision. When you love someone so much and something happens to him, you would go to any extent to save his life. At that moment I had only one desire—to get my father back at any cost.”

It was not easy for Devananda to convince her father. “Why sacrifice for me,” he asked, “when you have a whole life ahead of you?”

“I first posed the idea to my mother. Initially, she didn’t even consider it. I was not sure if it was even possible, but that was the only way to save him,” said Devananda, then a student of Sacred Heart Convent School, Thrissur.

There were many who tried to change her mind, warning her of all that could go wrong, but she stood firm. “Once it was clear that this was a possibility, my family stood by my decision,” said Devananda. “Many cautioned me. They told me that it would be extremely painful. But it never occurred to me as something painful. After the surgery, they asked if I regretted the decision. I will never regret it. When it comes to loved ones and family, I don’t consider physical pain to be a pain.”

Even when there was no hope, it was Devananda’s unwavering will that paved the way for the long battle that lay ahead. “We could see this family was different,” said Narayanamenon. “They had a special sort of courage and willpower. Even we had nearly given up hope, with his condition worsening. Devananda was very brave. When her mother came to me with her minor daughter willing to donate a part of her liver, we did not even want to consider it. We explained to them the medical and legal complications. After all, she is just a child. Yet they were persistent.”

And soon they took their battle to court.

The legal battle was tough. The Transplantation of Human Organs and Tissues Act, 1994, does not permit organ donation by a minor. On December 20, Devananda went to the Kerala High Court seeking permission to donate a part of her liver.

The court passed an interim order directing the 'appropriate authority' to hear the case and arrive at a decision. An expert committee, comprising three specialist doctors, was appointed by the authority to conduct a detailed evaluation of the case after examining the medical reports of the patient and the opinion of the doctor. The committee concluded that Pratheesh “is beyond the liver transplant criteria for hepatocellular cancer in the background of cirrhosis of the liver”.

And once the committee said that Pratheesh was not a candidate for liver transplant, Devenanda’s request was declined, too.

“Time was running out,” said Devananda's counsel, advocate P.R. Shaji. “If we were not able to convince the court how serious the issue was, the attempt would prove futile and we wouldn't be able to save his life.”

Devananda was shattered. Said her mother: “My daughter and I visited the members of the committee and explained to them our situation. We wanted a solution from them. If transplant was not an option, what was?

“They were unable to show a way ahead. It felt as if they were not giving us a chance. We couldn’t just sit idle and wait for him to die. We had come a long way after making up our minds for this, and therefore we went ahead with an appeal.”

Shaji argued in court that the 'appropriate authority' had focused entirely on Pratheesh’s health condition, rather than Devananda's capacity to donate. “As long as the donor is medically fit, is a near relative and a voluntary donor, the 'appropriate authority' is bound to grant permission,” he argued.

Though the act prohibits minors from donating, there are certain exemptions, and it was finally up to the authority to take the call. “I had to change my line of argument,” explained Shaji. “I spoke with various expert doctors in the field and familiarised myself with the technical and medical issues involved in an organ transplant in such a situation. I also studied the existing protocol for liver transplants.”

In the meantime, experts from Rajagiri Hospital informed the authority that only a liver transplant could save Pratheesh’s life. “The chance of recurrence of the tumour cannot be ruled out, but it is not a deterrent for a transplant,” said Narayanamenon. “In certain cases, when the tumour spreads outside the liver, a transplant is ruled out. In Pratheesh’s case, it was not so.”

A tumour in the liver would double in just three months, which is much faster compared to tumours in other organs. So a delay in surgery could lead to severe complications such as vascular invasion, a complication when the tumour invades major blood vessels.

Another sign of such complication is the rise in tumour markers, the proteins produced by the tumour, in blood. In the case of liver cancer, the marker is called AFP (alpha-fetoprotein). Radiation and related treatment to reduce the tumour size, known as downstaging technique, is then performed.

Through downstaging therapy, the tumour is reduced to make it feasible for liver transplant. The patient would be placed under observation and, if the tumour is not spreading, the transplant is done.

In Pratheesh’s case such an option was not viable as his liver was at risk and he wouldn't be able to withstand the downstaging therapy. So it had to be an immediate transplant. The complications in Pratheesh’s case were detailed and reports submitted to the authority by the doctors treating him. The authority and committee reevaluated the situation. “They studied the existing protocol of liver transplantation, which made the committee reevaluate the reports by the hospital and allow the petitioner’s plea,” said Shaji.

Devananda’s tests and all procedures before finalising the donor were yet to be done. After the court granted permission in December, Devananda was prepped for tests. When her test results revealed fatty liver, doctors were taken aback. “Fatty liver was not a good sign at such a young age. We were back to square one,” said Narayanamenon.

Devananda had almost won the battle. Now, to think that she was the reason doctors were unable to proceed, it hurt her. “All the struggles seemed to be in vain,” she said. “It was my mother who stood by me in those difficult times. The doctor also said that we could give it a month’s time and see if the condition gets better.”

With a disciplined routine and strict diet, Devananda started tackling the fatty liver. Restrictions were put on food. “I used to love rice but I had to reduce its intake,” she said. “I used to wake up at 5am and go to the gym by 5.30. I would be back by around 7.30 from the gym. My mother used to drop me and pick me up. Then I would go to school and be back by 5pm. Then followed schoolwork. The diet was assigned by the doctor and we followed it.”

The doughty fighter stunned the doctors. Her CT scan was clear this time.

Pratheesh had to undergo tests yet again to check the status of the tumour ahead of surgery. If the tumour had spread, they wouldn't be able to proceed. “Normally in liver disease cases, a majority of patients would have issues of alcoholism and improper lifestyle. In Pratheesh’s case it was a surprise as he had never taken alcohol,” said Narayanamenon.

The surgery was fixed for February 8. “There is a misconception that transplant is the last option,” said Narayanamenon. “It is not the last, but the best option, provided you do it at the right time. When you reach end-stage liver disease, there is not much time left and we need to perform the surgery quickly. The stabilisation process (which can take up to two weeks or more) is conducted then. In certain cases, the whole process could be fatal.”

Dr S. Sudhindran, chief transplant surgeon at Amrita Institute of Medical Sciences, thinks that women are more altruistic in nature than men. This would explain why, even as the law forbids it, young girls are willing to be organ donors, despite the risk of major complications. While Devananda won the legal battle, it should not send a message that this is normal, said Sudhindran. “It is not a simple thing at all. There is no doubt that she is very brave,” he said. “People think that it is a minor procedure, and that the surgeon will take just a small part of the liver that will grow back. A liver transplant is much more complicated than, say, a kidney transplant.”

Bile leak is a major post-surgery compli-cation. It leads to infections and the patient can take months to recover. Occasionally, the need to insert a tube and carry out endoscopy may also arise.

“Devananda is a determined person,” said Narayanamenon. “When we told her about the difficulties involved, she sought ways to overcome them.” When Pratheesh was asked whether he was in a state to proceed with the surgery, he said, “If I recover, I will be able to look after her and the whole family.”

Everyone knew that it was now about two lives. It got scary and risky. “Even a slight allergic reaction to the medicine would compromise her. We went by all protocols and explained the process of the surgery,” said Narayanamenon.

Since there was a possibility of blood clots during the transplant, the organ could turn dysfunctional. “For any general surgery, medical risks involve multiple organs—say, a heart attack, stroke or pneumonia,” said Narayanamenon. “And surgical risk involves bleeding and graft dysfunction. Due to various factors, grafts may go wrong. Post transplant infection and major blocks in blood vessels are some of the risks. They may not manifest on the surgery table, but occur on subsequent days.”

But by now everyone in the family knew the brighter side. The major advantage of the liver is that whatever portion of it is taken, it grows back. The liver regenerates after the initial complications are overcome. “We normally take the right portion of the liver—the right lobe,” said Narayanamenon. “For the transplant, roughly 60-65 percent of the liver is to be taken. The left lobe has only about 40 per cent and that is enough for it to grow back. But if any major issue occurs, then it won’t work and the donor will be in liver failure (which can happen in one in 350-400 donations).”

With young donors, one of the advantages is that they recover within a month. They can go back to their routine sooner than expected. Physical exercises are encouraged, including cycling and badminton. Physical activities are good for the liver as well.

When Devananda was being prepared for surgery, doctors had asked whether she would prefer to be given anaesthesia from her room—that way she would be in sedation while being wheeled in to the operation theatre. Her mother recalled her saying that she wanted to see the operation theatre. “Till now we have seen it only in the movies,” joked Devananda.

“She thinks she can calm everyone by saying such things but I knew how scared she was deep down,” said Dhanya.

Both the recipient and donor were brought at the same time to the operation theatre. The surgery took place in two theatres. There are two teams: donor and recipient. The team had five surgeons and the anaesthetist. The initial one and a half hours are usually taken for putting lines on the patient and giving anaesthesia. The donor surgery is done first, after which the patient is transferred to the ICU. Two days later, depending on the recovery, the donor is shifted to the room.

For the recipient, it is a complicated surgery. The major risks during the surgery involve bleeding, blood pressure and heart rate issues. Major bleeding could affect multiple organs. A lot of “bench work” is required while the doctors place the liver from the donor. Reconstruction of the portion from where the liver is taken is known as benching; it takes about an hour and a half.

The time in the theatre will soon turn into a haze for Pratheesh. “My daughter was bolder than me,” he said. “Even when the doctors explained the risks involved, she gave me the confidence to go ahead with it. The success rate the doctors had told me was 65 per cent due to various issues.

“Even the day before the surgery was tense. They had detected a variation in the PET scan and if the results were positive then they had to drop the surgery. Thankfully, it was negative. Had it been positive then I would have been alive only for six months.”

When Pratheesh opened his eyes after surgery, by around 9pm, he inquired about his daughter. The words “she is fine” from the doctor made him overjoyed.

On February 23, Pratheesh came home. And two months later, he is almost back to normal life. “The struggles and pain during the initial days have gone now,” he said.

Both Pratheesh and Devananda have been placed on a strict diet, staying off fries and oily food. Breakfast comprises protein-rich food, including the whites of six eggs. Since Devananda was diagnosed with fatty liver, doctors have advised her to monitor her food intake. Dosa, chapatti, peas, fish and chicken are part of the diet, while fried chicken, fried fish and beef are off the table. “Rice, being rich in carbohydrates, can only be taken in small portions,” said Dhanya.

Rajagiri Hospital had waived off Devananda’s medical expenses, including the donor surgery fee. After being discharged, Pratheesh was not expecting so many followup visits to the hospital. Till May, he has had to revisit more than ten times for checkups. These visits, which are scheduled by the doctor after assessment, and unplanned hospital admissions in case an anomaly is detected, have taken a toll on the family's finances. The surgery cost around 145 lakh, with around 15 lakh needed for followups and medicines. A loan and the small income from the shop have sustained them. “If things get worse, we don’t know how we will be able to handle it financially,” said Dhanya.

But Devananda is looking ahead. “I always wanted to pursue the medical field. I want to become a doctor and will prepare for NEET and try for a high rank,” she said.

Days spent at the hospital recuperating after surgery, where she witnessed for herself the power of healing and how doctors touch lives, seem to have strengthened her resolve.

dr-sanjiv-nair-maxillofacial-surgeon-guest-column

Sat Apr 29 09:34:37 IST 2023

The war in Yemen is just another atrocity created by humans for power. But for a maxillofacial surgeon who treats victims of such an atrocity, it is much more complex. Reconstructing their faces is in a way restoring their identities. Advances in technology have helped in many ways. 3D printing allows us to artificially recreate the original form of the face. The challenge then lies in choosing materials and sites to source the grafts. A combination of implants and vascularised tissues from the patient allows the sculpting of facial bones to their original or near original form.

There are challenges in restoring form and function. But mostly, we are able to help the victim speak, swallow and breathe, which are the minimal requirements. Team planning with the help of images results in the final outcome. No surgeon can restore a person's original face. As it was once said, “Beauty is not a state of perfect symmetry, but of how near it is to perfection.” As a surgeon my aim is to achieve this goal.

The patients' expectation of the surgery's outcome does pose a challenge. Therapy begins with counselling, showing the results of previous procedures, explaining the operations' limitations and offering social support during their stay in the country.

Rehabilitating these victims takes a lot of money and multiple procedures. Maxillofacial surgery, as a super speciality which evolved from World War II, is best equipped to solve this crisis. However, no effort by a surgeon or physician can heal the psychological impact of these injuries. No surgeon would like to see another war victim.

Nair was one of the maxillofacial surgeons who operated on the Yemenis.

how-doctors-in-india-healed-the-wounds-of-five-yemeni-farmers

Sun Apr 30 09:16:27 IST 2023

On the night of March 26, 2015, Abdullah Ali, a 40-year-old farmer from the village of Al Amrah in Yemen, was fast asleep in his room. It was troubled sleep, ever since the Houthi rebels had stormed the capital city of Sanaa in late 2014 and embroiled the country in a civil war. He was concerned about the safety of his wife and 10 children. Around midnight, he was woken up when the walls of his home shuddered to the sound of an explosion. It was an airstrike. Led by Saudi Arabia, Operation Decisive Storm had officially begun, when around 100 warplanes destroyed Houthi strongholds in various parts of the country, including military hideouts, government buildings and even the Sanaa International Airport.

With the involvement of Saudi Arabia and a coalition of Sunni-majority Arab states, the war escalated. Soon, the country was in chaos, with no electricity, food or water. While the war between the Shiite Houthis, allegedly backed by Iran, and the Yemeni government backed by Saudi Arabia reached a stalemate, the civilians paid a catastrophic price. With 24.1 million people―80 per cent of the population―in need of aid and protection, the UN described the situation in Yemen as the largest humanitarian crisis in the world. Nineteen million Yemenis were likely to go hungry soon, it said.

“Before the war, life wasn’t very good, but it was bearable,” says Abdullah. “Now, it has become terrible. We have not had electricity in 10 years. Last year, hundreds of children got sick and eventually died, but they were not allowed to go out of Yemen. Most of the schools and hospitals are damaged and dysfunctional. Roads and wells here have all been destroyed. In the south of Yemen, things are a little better. But in the Houthi-controlled north, where I am from, everything is under a blockade. Fuel and food cannot be transported from the south to the north. However much I describe what is happening there, you will not be able to understand. Only if you go there can you see how dire our situation is.”

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IN MARCH 2020, the Houthis took over the strategic Al-Labnat military base in the Al-Jawf province of Yemen. Brigadier General Yahya Saree, the military spokesperson of the Houthis, stressed the importance of liberating Al-Labnat, as “it was the last stronghold of the Saudi-led coalition forces in the Jawf province, which is a key to Marib”. Marib, where the war has been raging, is one of the most strategically important cities. Former UN special envoy to Yemen, Martin Griffiths, called the Al-Jawf offensive the “most alarming military escalation” in the war. According to the UN Security Council, civilian casualties from Al-Jawf and Marib likely made up a high proportion of the 187 civilian casualties recorded in the country in February 2020.

Mohsin Muhammad, 38, was one of the men wounded by the airstrikes on Al-Jawf. It happened around 11am, when he was working on his farm. One of the wells in the farm was bombed, probably being mistaken for an ammunition depot. In the Yemen war, there are no bunkers where civilians can take refuge and no sirens announcing an offensive. You can get bombed anytime and there is no way to protect yourself. Shrapnel from the bombing struck Mohsin, and he lost consciousness. His right eyeball, and much of his orbital cavity―or the socket of the skull in which the eye is situated―was destroyed. There were three others on the farm, who took him to a nearby hospital. He was given blood transfusion and then transferred to the capital. “I didn’t feel anything when I woke up,” he says. “I was numb.”

According to the World Bank, health care in Yemen is on the brink of collapse. Only 50 per cent of the health facilities are fully functional. The rest have been damaged or destroyed, and health care workers have often been targeted throughout the conflict. “The Covid-19 outbreak, flooding, locust infestation and climate-related hazards have further compounded the impact of the conflict on people,” states a 2021 World Bank report. “In recent years, the already dire humanitarian situation in Yemen has been exacerbated by multiple and overlapping infectious disease outbreaks such as cholera and dengue.”

The Yemeni farmers say that there are only three functional hospitals in north Yemen, and all of them are overcrowded. That is why those like Mohsin had to seek treatment in India. It was not easy though. Most flights are suspended and people allowed to leave the country only according to the whim of those in power. Some Yemenis have been waiting for years to get treatment abroad.

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I FIRST MET the Yemeni farmers outside the department of maxillofacial surgery at the BMJ Hospital in Bengaluru. Some of them were dressed in traditional attire ―loose-fitting kurta-pyjamas, overcoats, and printed headscarves. But that was not the reason why they attracted attention. Rather, it was their scarred faces. Ten of them came to BMJ around three months ago. They were introduced to the maxillofacial surgeons at the hospital through Junaid, a Yemeni intermediary who first brought a wounded Yemeni to the hospital six months ago for facial reconstruction surgery. After its success, he brought the others. Two of them returned to Yemen after their surgeries, but the others are either recuperating or awaiting further surgeries.

“I felt that with my damaged face, I was not acceptable to others,” says Nasser Muhammad, 27, who did four procedures in Yemen and two in India. “I was injured in 2015, and have been suffering all these years until I came to India.” Nasser and the others say they chose BMJ because of the economical cost of treatment (around Rs3.5 lakh for each patient) and the reputation of the doctors. The money was partly paid for by the Yemeni government, and the rest collected through contributions from their villages. In Yemen, they all stand together, say the men. The war has ravaged them all, and everyone helps each other.

Nasser’s entire mid-face was injured. His eyeball and nose had collapsed with the destruction of his nasal septum. The first thing the doctors had to do was recreate the missing upper jaw. They did that with a bone from his leg. “So, what you see underneath the lip is actually bone from the leg,” says Dr Anjan Shah, one of the maxillofacial surgeons who, along with Dr Sanjiv Nair, Dr Sridhar K.R. and Dr Balasubramanya Kumar, operated on the men. They were assisted by a team of five junior doctors. The next stage was to create the partition between the nose and the mouth and put in implants. Once the foundations of the bone were fixed, the shape of the nose could be controlled. At the same time, artificial teeth were clipped on to the implants. His current teeth are temporary, so that the doctors can monitor the quality of his speech and swallowing. If required, they will make him stronger, more durable teeth before he returns. There is also a small depression under his eye. Fat from the stomach will be taken to fill it and simulate the original shape.

Many of the men came with feeding and breathing tubes, because most of their upper and lower jaws had been blown off. The doctors’ priority was to restore speech and mastication. It was more function than appearance that they were concerned with. “As long as they can walk down the street without anyone staring at them, we are satisfied,” says Shah. “Because we are never going to make them look as they did before. The scars on their face, for example, will never go. We can try to get them as near to normal as possible.”

Since the doctors did not know what the men looked like before their injuries, they simulated the surgeries on 3D-generated virtual models. There is no artificial tissue that can replace the bone of the jaw, skin of the lip or tongue, so they took bone and skin from the leg, which is a very versatile flap. Through the 3D model, a template was created to get these in the right shape. The bone was split into pieces, almost like a jigsaw puzzle. During the surgeries, they connected the bone grafts with the blood vessels in the patients’ necks, thus restoring the function of these body parts.

“There are a couple of risks involved,” says Nair. “From where we take the bone, there is a risk of the leg losing blood supply. That is a small risk, though. Normally, after physiotherapy, the patients walk within the third day. The second risk is losing the bone graft. This happens if a blood clot appears when you reconnect the blood vessels.” Normally, the surgeries take eight to 10 hours, with breaks in between to allow the blood vessels to reperfuse, or get back the blood flow.

“We do it simultaneously,” says Kumar. “So, when he is harvesting the graft, I might be preparing the head to receive the graft.”

The doctors say they were impressed with how good the surgeries done in Yemen were, even though the local flaps used had been invented during WWII, and the techniques were quite outdated. Still, the surgeries worked, mostly because the men were fit, and hence could heal easily. But they would never get in Yemen the state-of-the-art treatment they were able to get in India. “We are able to offer the same kind of treatment that is available in the first world―perfect remodelling and reconstruction of the face,” says Nair. “Even if they don’t have the money, we can raise the funds. Our goal is that nobody should go untreated.”

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IN THE EARLY 1980S, the volcanic valleys of Al-Baidha in Yemen were covered in beautiful, rain-fed terraces of wheat and other cereals, writes Helen Lackner in her book, Yemen in Crisis: Devastating Conflict, Fragile Hope. Local men were irrigating their fields through the diesel pumps they bought with their income from working in Saudi Arabia. Some of them produced qat (an Arabian shrub whose leaves are chewed as a stimulant) and other high-value crops. Within two decades, the wells had dried up. Today, many villages of Al-Baidha have been entirely abandoned, as all the ground water has gone. “Mismanagement and misuse of this basic resource has turned lovely villages into abandoned and collapsing buildings,” writes Lackner.

Abdullah Saleh Muhammad, 60, was the head of a village in Al-Baidha before he was injured. He spent his days mostly on his farm or in a village shop, where he settled disputes and acted as an intermediary between the villagers and the government.

“I was happy in Al-Baidha, with my two wives and 12 children,” he says. “I came to India for treatment because people here care for humanity. They don’t take sides. They are very kind. Indians don’t reject us just because we are from Yemen. They don’t look at religion or country. I am very satisfied with the treatment I received. I feel like India is my second home. I like it more than other Arab countries.”

For Esam, 19, what he misses most about Yemen is the delicious mandi (a traditional Yemeni dish of meat and rice) that his mother and sisters used to make. “Now, I cannot eat any solid food. I am surviving on Maggi morning, noon and night,” he says. “I am tired of it. I want to go back. I miss everything about Yemen. All those days I spent playing football and chewing qat with my friends. Most of all, I miss my fiancée, Jameela.”

But is he not afraid of going back? Of another airstrike that could take his life? “No, I love my country and am not afraid,” he says. “I keep hoping the war will end soon, and that I will be able to build a new life with Jameela.”

Yemen is the poorest country in the Middle East, and it is not easy to leave it. Travelling through Saudi Arabia is near-impossible. You would have to cross the Red or Arabian Sea and traverse many African countries to reach Europe. But even if they could, these men would not leave Yemen. The scars they bear on their face are the emblem of a country in shambles. But it is a country they are not yet ready to give up on.

parenthood-journey-of-india-s-first-transgender-couple-ziya-and-zahad

Sat Mar 25 18:49:24 IST 2023

Ziya Pavel always wanted to be a mother; Zahad not so much. But the funny thing about love is that it makes you do things that you never imagined you would. And so, Zahad reportedly became the first trans man in India to birth a child.

The journey of Ziya, 21, and Zahad, 23, in embracing their true identities may be similar to many in the transgender community, but as a trans woman and a trans man embarking on a journey of parenthood, it is like no other. Right from their decision to have a baby together a year and a half ago to not revealing the child’s gender soon after its birth on February 8, their story has been unconventional.

Meet cute

The day we meet the couple and the baby is the day for the baby’s routine checkup at the Kozhikode Medical College. The hospital visit was slated for morning but got rescheduled to noon because of the doctor’s unavailability. When we arrive at the couple’s rented place in Kozhikode’s Ummalathoor, we find Ziya, with the baby cradled in her arms, walking down the narrow lane towards the main road. Zahad, still recovering from the C-section, is at home, she says. We decide to accompany Ziya and the little one to the hospital. At the medical college, Ziya navigates her way to the paediatrician’s room with ease. She is a familiar face here, evident from the warm greetings and inquiries she receives from the nurses and staff. Some inquire about Zahad's health and the baby's progress, clearly happy to see the new family thriving. Since the doctor was making his rounds in the maternity ward, Ziya takes the baby there. Post consultation, she makes her way to the milk bank to collect breast milk for the baby, to be fed thrice a day.

Once back home, she feeds the baby with a feeding syringe.

Zahad is friendly but reluctant to talk about the pregnancy. It is only later that he agrees to talk over the phone. The first two weeks post delivery were painful. Even climbing stairs had become an uphill task for him. Ziya put up a cot for him and the baby in the living room. “In the first week after the delivery, I was bedridden,” says Zahad. “I could not even turn to the side. It was very tough to even go to the bathroom back then. But since it is for our child, I forgot about the pain. Each time I look at the baby, I forget every inconvenience.”

Beyond binaries

Inconvenience is not new to Zahad and Ziya. In a world that lives and believes in binaries, they have been living with an inconvenient truth—their identity. Zahad was recorded female at birth but identifies as male, and Ziya was recorded male at birth and identifies as female. “Zahad was born in a Christian family in the coastal belt of Thiruvananthapuram and I was born in an orthodox Muslim family in Kondotty of Malappuram district,” says Ziya. “As a transgender, I have undergone experiences similar to others in my community. I have been through bullying and loneliness, from family and friends. I am the youngest among eight children. My mother died a while ago and my father remarried. I do not have any contact with my father now.”

Ziya is now a dance teacher and performer. The walls of their living room are adorned with portraits of her dance performances. She had a passion for dancing since childhood but never got an opportunity to learn it from a dance teacher. She taught herself the basics of classical dance by watching students at dance classes in school and through videos. “Even as a child, I used to perform in female costumes,” she says. “However, my family did not appreciate it. My family used to question my identity, asking why I couldn't live as either a man or a woman. During my time in plus one (equivalent to class 11), I discovered that there was a transgender community, although my family would often bring it up in a derogatory way, labelling me as someone similar to those in the community. Despite this, I never imagined that I would become a transgender individual, nor did I initially desire to do so. However, due to the constant bullying from my family about my nonconforming identity, I eventually decided to become a woman.”

Ziya’s mother died when she was in plus one and her family stopped sending her to school. “Within a year, I officially came out as a transgender woman and went to a shelter home for transgender individuals in Kozhikode,” she says. Five months later, Ziya left the shelter home to live with her mother in the transgender community—Deepa Rani. “She assured me that she would care for me like a mother,” she says. “She promised to support me in my studies. Despite moving in with my mother, my family tried to take me back twice, with police involvement. Fortunately, as I was already 18, they had no control over my decisions.”

Zahad’s family, meanwhile, was more open towards his decision to go for a transmasculine transition. “When Zahad started going for a job, he underwent breast removal surgery. At that time, he was employed at Techno Park, Thiruvananthapuram,” says Ziya, while adding that a male perception started forming in him from childhood. “If you look at his old photographs, you can see that he always had a masculine demeanour,” she says.

It was when Ziya was living with Deepa Rani that she grew closer to Zahad, thanks to social media. “Initially, we planned to keep our relationship a secret till we got jobs and were ready to settle down,” says Ziya. “Unfortunately, my mummy caught us, and it caused issues. When the matter became problematic, Zahad suggested that we live together, and Ashitha, his community mother, agreed to let us stay with her for a while.”

Thus, the duo started living together. And that is when they decided to have a child. “I had always dreamed of having a baby, as I have great fondness for children,” says Ziya. “It was primarily my interest, and Zahad had never considered getting pregnant before. When I shared my desire to have a baby, Zahad was hesitant at first owing to concerns about societal perceptions. I, too, had apprehensions. However, after seeking advice from medical professionals who provided assurance as well as receiving support from one of my sisters, we began to feel more confident about having a baby.”

Zahad had started taking testosterone therapy as part of his transition process in 2020 after coming to Kozhikode. “This was after I had done breast removal surgery,” he says. “I had already taken eight to nine doses. I stopped taking the hormones after taking advice from the doctors. They advised that our wish to have a baby would be successful only if we stop taking hormones.” Like Zahad, Ziya also had been undergoing hormone therapy. When they decided to have a child, she, too, halted the hormone therapy.

The couple had considered the possibility of a trans woman pregnancy instead of a trans man pregnancy. But the complexity and very low chance of success deterred them. “An adoption is an unviable option for transgender couples in India,” says Ziya. “We also explored alternatives such as surrogacy, but since Zahad had not yet undergone uterine removal surgery, we decided to delay it until the birth of a child. The doctors advised us to have a thorough discussion before making this decision, which we did. We made our choice and took every scenario into account.”

Activist Abhina Aher, a trans woman herself, says that those who criticise the choice made by Ziya and Zahad do not understand that sexuality and gender are different concepts. “Procreation is an individual’s right, irrespective of whether that person is a man, woman or transgender,” she says.

Pregnant pause

Multiple studies have shown that many transgender and gender-diverse individuals desire genetically related children. They regret missed opportunities for fertility preservation, and are willing to delay or interrupt hormone therapy to preserve fertility and/or conceive. Air Commodore (Dr) Sanjay Sharma (retd), CEO and managing director of the Association for Transgender Health in India, says that contemporary Indian societies need to normalise trans man pregnancies just as in many countries. But when compared with cis-gender women (women who identify with the gender they were assigned at birth), it is a more weighted decision that trans men have to make regarding pregnancy, considering the complexities it involves. “For cis-women, bodies and their perception would match. Trans men would have a uterus and ovaries, but their perception may not match that,” says Sharma. “So, there comes the first sort of gender incongruence.” He explains how most people decide about parenthood in their second to third decade of life, but gender perception starts very early in life, at two or three years of age. “And, you are trying to push a narrative that is not being believed by others,” he says. “By the time you feel empowered enough to start expressing this, your priority may not be parenting; it is of acceptance. And herein comes the biggest hurdle to becoming a parent. Acceptance in your peer group means you want interventions that will help you pass among the peer group. So, if I am a transmasculine person, I would be looking for masculinisation, and I would be asking for interventions that will cause masculinisation. But these interventions may interfere, not may, they do interfere with a person’s ability to conceive.”

Sharma adds that the hormone treatments that are done as part of transitioning are teratogenic, meaning they can cause damage to the growing foetus. “So, if a transgender person approaches a doctor for hormone therapy, then the doctor needs to discuss with him/her the effect the hormones can have on fertility,” he says. “But a lot of people come for hormone therapy in their late teens, and the perception at that time would be just to start interventions. The demand for pregnancy comes later when you have a partner.”

Those who start their transition in adolescence are often treated with gonadotropin-releasing hormone agonists (GnRHas)—substances that keep the testicles and ovaries from making sex hormones by blocking other hormones that are needed to make them. GnRHas may be used for pubertal and menstrual suppression until a transgender individual is ready for a masculinising treatment. Studies show that GnRHas has an impact on the maturation of gametes (reproductive cells), but they do not cause permanent damage to the functions of gonads (testes or ovaries). So, if GnRHas are discontinued, oocyte maturation is likely to resume. There are also studies talking about the effect of testosterone therapy on reproductive function in trans men. Researchers have observed that normal ovarian function with oocyte maturation resumed after testosterone interruption in transgender men who have achieved natural conception. However, the scientific world is yet to come up with a major study evaluating the effect of long-term hormone therapy on fertility. Also, the optimal time for both the discontinuation of testosterone prior to pregnancy and its resumption after pregnancy is still unknown.

Zahad and Ziya underwent numerous tests before conception to ensure safe and healthy childbirth. “Sperm analysis was done [in my case],” says Ziya. “We did not have all of Zahad's medical records following his breast removal surgery, so he underwent a comprehensive physical examination to determine the extent of procedures performed on his body. This involved multiple tests.”

The couple did not publicise the details of the pregnancy until the third trimester. Zahad used to work in a supermarket in Kozhikode. He stopped going for that job. During the early stages of pregnancy, Zahad experienced frequent vomiting and required intravenous therapy. He was hospitalised for a couple of days. The Kozhikode Medical College helped the couple deal with psychological and physiological stress. “Mentally, there was a risk of issues arising, since the patient was a man and suddenly he became pregnant. There are psychological changes coming over. So, he was given psychiatric consultation and mental health support,” says Dr Jyoti Ramesh Chandran, professor and head of the Institute of Maternal and Child Health at Kozhikode Medical College. “For consultation, we used to see him at a separate place. He used to come in his normal attire [which is masculine], and did not require to stand in a normal queue, because other women may not like a man standing in the queue.”

As the pregnancy progressed, it became tough to walk or travel for Zahad. “I faced a major weight loss,” he says. “Currently, I am 57kg, but my weight had gone down to 40kg during pregnancy. Also, I became frail, so when I was six months pregnant, I was shifted to my home in Thiruvananthapuram. I was under my [biological] mother’s care for the next couple of months.” Ziya had dance classes at Pathanamthitta then. She kept travelling back and forth to visit her partner.

The couple returned to Kozhikode and the delivery was planned for March 4 at Kozhikode Medical College. However, in the first week of February, Zahad’s sugar level shot up—a dangerous condition for the child in the womb. “So, we conducted the delivery earlier than we planned,” says Chandran. “After [the C-section], another issue arose. Though the patient had removed the breasts, a part of the chest in the axilla (underarm) started swelling as it started producing milk. We gave medication to suppress it.”

Chandran adds that though Zahad has a manly demeanour, he also has motherly instincts. “It was there in his eyes…the way he was caring for the baby,” she says.

Ziya and Zahad also reject a father-mother binary division while taking care of the child. “Right now, I am playing the roles of both a father and a mother, because I have to take care of both,” says Ziya. “I have to manage the financial issues. But a strong motherly feeling developed in me even before the delivery of the child. Though Zahad was carrying our child in the womb, I had a special feeling…. For instance, when we felt the baby kick or move in the womb… I do not how to express that feeling in words. It is something to be experienced.” She says that parenting cannot be divided into separate columns of a father and mother. “It is the situations that define our role at a particular time,” says Ziya. “It is our child, and we want to give the best to her. It is not the title of father or mother that matters. Our only concern is to love our child as much as we can.”

Whether it is in the case of a cis-gender or transgender person, pregnancy and post-pregnancy phases are challenging, not just at the physical level but also emotional and psychological levels. Dr Jithin Joseph, clinical research fellow and senior resident at Kasturba Medical College, Manipal, says that in the case of transgenders, the challenges are more because of the hostile way society and even the health care system treat them. “Our society thinks that only a [cis-gender] woman can give birth,” says Joseph, who is a comprehensive sexuality educator and a gender and sexuality researcher, and a member of the World Professional Association of Transgender Health. “There is huge discrimination against transgenders; a transgender man may get ridiculed for getting pregnant. Even our health care system may not provide inclusive care to them.”

During pregnancy, a person—whether cis-gender or transgender—will undergo hormonal changes. So, there is a risk of developing postpartum depression or postpartum psychosis. In the case of trans men pregnancy, there is an added challenge. “In a planned trans man pregnancy, they would require to stop testosterone four to six months before conceiving,” says Joseph. “In those with gender incongruence, there is a risk—stopping hormone treatment may worsen their incongruence along with the pregnancy. There is a heightened risk of developing mental health issues. However, instead of blaming them, our focus should be to create a more supportive and inclusive environment.”

Joseph says that the first step towards that would be discussing the various reproductive options for the transgender couple. “In many countries, transgender pregnancy is a normal affair, and there is more awareness and support to preserve ovum or sperm before starting hormone therapy or undergoing surgery,” he says. Joseph also advises transgenders not to have accidental pregnancies while on hormone therapy to avoid any congenital disorder in their babies. The psychiatrist also notes the need for trans men to have a close followup with their gynaecologist, endocrinologist and mental health professionals to monitor for any issue in the post-delivery period.

“If a trans man wants to feed the baby, we may have to withhold testosterone therapy for a while, like probably two to six months to one year,” says Joseph. “But if that person has severe dysphoria, we may not be able to withhold the hormone treatment. In such cases, we may have to find alternative feeding options for the baby. But the inability to feed the baby may affect them emotionally. At the same time, if testosterone therapy is not restarted, it may add to the incongruence, which in turn could worsen their mental health. So, a post-delivery followup, tailored for each individual, should be made available by our health care systems to support transgenders.”

Ziya says that the medical college is providing good care and support to Zahad, the baby and her. “Also, we are grateful that we get enough breast milk from the hospital,” she says. “In fact, many well-wishers of ours donated breast milk at the bank at the medical college so that we could get adequate quantity for our child.”

Chandran says that Zahad will undergo an examination after six weeks to check whether everything is fine. “Within three months, he will be able to start hormone [treatment] again,” she says. “We advised him not to do removal of uterus and ovaries now, as he is just 23. Because ovaries protect him from so many problems like atherosclerosis, heart diseases and osteoporosis. We told him that he can decide on it later. He can do it when he is around 40.”

Baby and a better world

The world came to know about Ziya and Zahad’s story when their pregnancy photo shoot went viral on social media. “The photo shoot was not intended for publicity, but rather to commemorate every aspect of childbirth,” says Ziya. “I meticulously documented everything, and even created a cast of Zahad’s belly. I planned to share everything with my child, to show her where she came from. The photos were meant for our personal album, but we were so impressed by their beauty that we decided to share them on our social media handles.”

The photos were uploaded on January 31. A week later, the baby was born. The baby’s name—Zabiya—and her sex were revealed exactly a month after her birth (March 8). But the discussions that the pictures ignited continue. There were many to appreciate and bless them. Equally, there were many to criticise the couple and their choice. There was also a section raising bizarre concerns about the child’s future.

Ziya is well aware of the negativity that a section of society holds. “Our main concern is to protect our child from any negative experiences and ensure her safety,” she says. “Our goal is to raise a compassionate and humane individual, without imposing any gender expectations on the baby. If someday she wants to undergo a gender transition, we will support her completely. Although we acknowledge that society may not always be accepting, we believe in empowering our child to be resilient and strong. A lot of people have commented about the future of the child. If society ensures a safe environment, that question does not need to arise. Just let us live peacefully.”

Aher notes that many are concerned about how the child will relate to her parents. “Who will the child call mother? Who will the child call father? All these are very stupid perspectives,” she says. “They should be least bothered about it because motherhood and fatherhood are not associated with your sexual organs, or your sexuality, or your gender expression. It is a feeling.”

Aher adds that the story of Ziya and Zahad started a dialogue within India’s transgender community, too. “Here when we are talking about transgender identity, we are still following the binary rules,” she says. “Like a trans woman has to dress up like this. A trans man has to dress up like that. A trans man should not be doing this… trans men should be drinking. So, all these gender stereotypical rules are being applied to the trans community, too.”

Shaman Gupta, who is the co-chair of Transgender Welfare Equity and Empowerment Trust and identifies as a trans man, says that it “opened the mind” of many within the community, and “broke the internal stigma” related to trans men pregnancy. “Many have realised that if this person is doing it [pregnancy] so confidently, then they can also embrace it,” he says. The story of Zahad and Ziya, adds Gupta, would inspire more transgender couples to think about having babies.

age-no-limit-in-finding-love-and-companionship

Tue Mar 07 23:19:43 IST 2023

Love doesn’t come with a use by date. Model-actor Milind Soman, 57, would agree. He married fitness entrepreneur Ankita Konwar when he was 52 and she 26. And, he is no exception. Last year, Indian Premier League founder Lalit Modi, 59, declared his love for Sushmita Sen, 47, on social media. Then there’s former solicitor general of India Harish Salve, 67, who married London artist Caroline Brossard, 58, in 2020. All of these relationships made headlines, not necessarily for the right reasons. In a society where any divergence from a set way of life is looked down upon, such love does come with stigma and restrictions―the cost of seeking companionship and intimacy at a time when the elderly are expected to look after grandchildren. For someone over 50, choosing to lead a life that is not conventional or normal enough can have an impact on their emotional and mental wellbeing. It, therefore, comes as no surprise that only a few of the 10.38 crore senior citizens (people aged 60 and above) in our country chose to tie the knot in their sunset years.

But there is a change, even though subtle and slow, in our elderly population, most of whom are baby boomers, born at the end of World War II. “The baby boomers have a curiosity about life,” says Dr Shruti Madgavkar, a psychologist with P.D. Hinduja hospital in Mumbai. “They want a chance to stave off decay, have fun and enjoy. In the age of technology, with many older people taking well to WhatsApp, they are more aware and assertive of their choices.” She says she has seen a significant change in the mindset of the elderly of today as compared with those about a decade or two ago. “We now have men in their late 70s and early 80s, too, who dye their hair, women who wear jeans and much more,” she explains. “The assurance of having a partner in one’s later years contributes to mental and emotional stability. But it will be a long time before it gets accepted fully in our society.” A number of dating sites, including Truly Madly, are encouraging “seniors” to register and “look actively for partners”. “We are seeing a steady number of hits when it comes to seniors looking for companionship,” says an executive from a popular dating website.

A study in rural south India, published in 2015, found that about 27 per cent of the older population (60 and above) was sexually active. It progressively dropped with age, and none was sexually active after 75. With sex seen as a mere procreative tool, the elderly are expected to suppress their desires and live a sedate, solitary life. Many older adults, therefore, seldom express their desires, sexual or otherwise. “While companionship goes beyond intimacy, the latter, too, is an important factor in establishing mental peace,” says Madgavkar. “We need to rid ourselves of the notion that our seniors cannot live a fulfilling life as the young do.”

But what drives senior citizens to seek company and comfort the most is the dull ache of loneliness. In his research paper titled 'Companionship and Sexual Issues in the Ageing Population’ in the Indian Journal of Psychological Medicine, Abhishek Ramesh from the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, writes that the pandemic brought this subject into sharp focus, with partners separated because of lockdown, isolation, or loss of partner, which eventually led to loneliness, isolation, and grief.

Agrees Dr Sujay Joshi of Dignity Foundation, which works towards mitigating loneliness in the elderly. “Not that it was absent earlier, but it has become more pronounced now,” he says. “What we need in India are low-cost social spaces where the elderly can meet, and spend quality time together. That is because companionship has no substitute.” Dignity Foundation has 25 companionship centres, also called Chai Masti Centres, across India where those over 60 come together to spend quality time for at least two hours a day, five days a week.

According to Aparna Shankar from the department of psychological sciences, Flame University, Pune, “loneliness is common as people age and it has a significant impact on health and wellbeing among older adults”. She also quotes from the Wave 1 of the Longitudinal Ageing Study in India (LASI) that came out in 2020, which is the only such comprehensive survey of the elderly in India brought out by the Ministry of Health and Family Welfare along with the International Institute for Population Sciences. According to the report, in the surveyed years of 2017-18, more than 25 per cent of the population belonged to the 45 to 80 and above group; of this, close to 14 per cent fell in the 60 and above age group. In the 60 plus group, the married constituted 61.6 per cent; of this, 36.2 per cent were widowed. Only 43.9 per cent in this age group reported to be satisfied with their lives. And, as per the report, the elderly population in India is expected to rise from 8.6 per cent (2011 census) to 19.5 per cent by 2050 and those over 45 will constitute 40 per cent of the population by the said year. The report also stated that 20.5 per cent of adults aged 45 and above reported moderate loneliness, while 13.3 per cent reported severe loneliness. “Loneliness has been identified as a determinant of cognitive decline and dementia as well as of poor physical functioning and disability among older adults,” says Shankar. “Similarly, loneliness is associated with an increased risk of developing depression with evidence suggesting that this association may also be bidirectional. Poor health, poor functional status, worse mental health and cognitive problems are important determinants of loneliness among older adults.” The prevalence of diagnosed psychiatric problems among the elderly, says the LASI report, is 2.6 per cent and that of depression is 0.8 per cent. Those who are separated, divorced, deserted and living with others (relatives) are more likely to be depressed, says the report.

This brings to the fore the need for company and companionship in one's later years, especially as families go nuclear. And while there are companies like Goodfellows, backed by Ratan Tata, that employ young graduates to provide company to senior citizens, Dr Sridhar Vaitheswaran of SCARF says, “The main support comes in the form of remarriages in one's later years, with a belief that there is someone to talk to at any time of the day and someone to share the rest of one's life with.” With age, the contours of love and relationships evolve and are modified as needs and priorities change. “Remarriage is done out of choice,” says Vaitheswaran. “It is about companionship and being loved, which is very important. When you are older and wiser, you make smarter decisions when it comes to choosing a spouse because you have more experience and it is not your hormones that do the talking. The decisions are refined because the choice is not driven biologically.” As far as society’s views on remarriages among the elderly are concerned, they are simply outdated misconceptions about ageing, he says, adding that not many people lived for this long in the earlier days.

Abdullah Mangarun from the Mindanao state university in the Philippines recently published a research paper in which he examined the lives of older couples after remarriage via their “experiences, including doubts, fears, apprehensions and satisfaction of their decision to remarry”. The important themes that emerged from the study were that remarriage brings forth newfound happiness, contentment, lifelong companionship and graceful ageing. “Therefore, successful marriage in old age is possible when both are ready to take on new responsibilities,” says Mangarun. “There is fulfilment for a better quality of life in old age when both know how to give and take in a relationship.”

A few years ago, Nathubhai Patel, 73, from Vasna in Gujarat, founded Anubandh Foundation that holds weddings for senior citizens in India. Till date, he has helped 195 couples aged over 52 years get remarried. “Our children have no time to devote to their parents,” he says. “Both sons and daughters are equally busy and it gets difficult for the aged to spend time every single day all by themselves.” The foundation gets more than 10,000 biodata and has community sammelans across cities, attended by some 50 women and 150 men from diverse communities. But not all relationship made here succeed. “At least five to six of the weddings that we have organised so far have failed,” says Patel. The reasons are many: conflict between the woman and her in-laws, lack of support from children over property disputes and the incessant demand for sex by men over 70. “Women mostly want a partner who is well-to-do because they do not want to go through the struggle again, and men prefer women without strings, that is without children, because they want their second innings to be responsibility-free,” says Patel. “But primarily, those marriages work where the emotional interdependence and good mental health of both is of crucial importance to each.”

THE WEEK talks to a few such couples to understand how they negotiate societal stereotypes to live life together on their own terms.

EQUALITY WITH HONESTY

Actor Suhasini Mulay, 72, was no believer in the institution of marriage till she met Atul Gurtu, 76. She was 60, and he 64 when they met. “I always thought that there were more unhappy marriages than happy ones,” she says, “because it is always an unequal partnership in which the woman bears the brunt of homely duties and child-rearing responsibilities and the man holds responsibility of neither.” With no intention of getting married ever and also because she had given up on the hope that her ideal man would come her way, Mulay from Mumbai found Gurtu on Facebook by a stroke of serendipity. She had created her profile on the social media platform, on the insistence of a younger colleague, to bag more work. While causally surfing one day, she came across the profile of a particle physicist at CERN in Geneva who was decoding the working of the universe. The experiment was of interest to Mulay and she sent him an email asking about it. A few exchanges later, he asked for her mobile number, to which Mulay, aware that he was looking for companionship, simply wrote, “Good girls don't give mobile numbers to strangers.” There was silence at his end.

Mulay did her own background check and found him to be genuine. Gurtu had lost his wife, Pramila, to cancer and his son, too, had died earlier. “There was a need for companionship that was above anything else,” says Mulay. “He was emotionally very vulnerable as Pramila had expired barely five years before we met.” Gurtu was keen on meeting her but she wasn't sure. He then wrote something that changed her mind: “You seem to be very happy and busy with your life and I wish you luck. But remember if you want any change in your life at all, it will not happen automatically.” Mulay rang up a friend of hers who had remarried, at around the same age as her. He told her that her friend circle would diminish with age and that there was no harm in taking a chance because it was important to have a partner for one's mental and emotional wellbeing at a vulnerable age. What finally convinced her was an article Gurtu wrote in a magazine on what happened when his wife was diagnosed with cancer. “He said how he wanted to make her live out all her wishes for as long as she was alive,” recalls Mulay, “and I think that quality of putting the other before self is what struck a chord with me.”

On the night after their first date, Mulay wrote down things she would not compromise on and one of them was equality. She was fine with him being a vegetarian and a teetotaller as long as he had no objection to her partaking in these things. To him, the only non-negotiable factor was honesty. He told her that even if she ever decided to cheat on him he would rather hear it from her than from someone else.

As they met in restaurants, they realised that they had similar views on many issues. Around that time, he was to retire in a few months and wanted help rearranging the furniture. She readily agreed to see him at his place. Something as simple as him writing down the measurements as she took charge with measuring, she felt, had broken stereotypes. “It became very clear very soon to me that I wanted to spend the rest of my years together,” she says. Gurtu was a bit unsure initially about whether they would click; he wanted to give it a try nonetheless. If things did not work out, they would “simply shake hands, kiss and part”. “We are nearing the end of our lives and I want to walk with you for as long as I can walk with you,” he told Mulay. Members from Pramila's family, including her eldest sister, embraced and “adopted” Mulay, and Mulay's mother and sister welcomed Gurtu, after being “super impressed by him”. “She [mother] asked why he wanted to marry at this age and he said I know Suhasini can live her life on her own, but if you are given a chance, then it is stupid not to try.”

That clarity comes with age. Mulay, in fact, got “quite worried” in the first year of their marriage because they never had a fight. But they realised that their fights were no longer about their respective egos. “By now we know better than to feed our egos,” says Mulay. “We simply sit down, talk and discuss and make it a point to listen to each other. I don't think we'd have had this sort of patience earlier.” For instance, Gurtu disliked Mulay using her phone while dining, and just asked her, “Can this wait 15 minutes?” From that day on, Mulay ignores her phone at the dining table.

Eleven years on, the couple has found their rhythm to negotiating everyday life―he prepares the morning tea, does the laundry; she cooks one meal at home everyday; and the two prepare a five-day meal plan in advance. “Atul does not know how to cook and we don't have a full-time maid,” says Mulay. “So if I am home late from work, he doesn't wait for me to fix something, [ordering food from outside and making] sure there is food on the table. I think that also takes maturity of another kind. He is not a man-child; he is a grown, mature man.” On her shoot days, he takes charge and on her off days, they work together.

One thing that has stood out for a self-employed person like Mulay is the financial support and stability he brings with his fixed monthly pension. “Also, when we got married, I was very jittery about his money and my money,” says Mulay. “But now I have realised that marriage is also financial partnership.”

The couple does not believe in a happily-ever-after; they know that marriage is actually a lot of work. “We both know that at our age people do not expect us to have romantic relationships, but it was only important for us that our families embraced our partners,” says Mulay. “With each other, our emotional needs are met and that's what matters.”

COMPANY, CARE

It is 7pm on a weekday when Vijay Shenava finally finds some time to reply to a phone call he had received earlier in the day. At 69, he follows a set pattern of living that keeps him occupied through the day, leaving no time for chit-chatting with friends. Perhaps, a separate slot must be reserved for that or an appointment will be great, he quips. “At my age, it is a privilege to have something to do every day and not have to suffer the misery of idleness,” he tells THE WEEK from his Mangaluru residence. “Even more significant is the reassurance that one doesn't have to go through one's remaining life all alone. It gives me immense mental peace and emotional sanity in knowing that there is someone with me in this house.”

That ‘someone’ is Shobha, 54, his second wife, whose presence, he says, brought him back from the black hole of “unending anxiety and depression”. Ever since Sarala, his first wife and mother to their two children, died from kidney failure in 2013, Shenava felt as if a part of him had been taken away. The couple had been together in a “happy and healthy marriage”, with her working as a manager with a public sector bank, while he attended to their children and looked after their agricultural land. He would cook, clean and care for the kids while she would be at work. He would make her a warm cup of tea on her return after a long and tiring day. Shenava, a man of few words, found it challenging to deal with her loss. With her gone and the children married, the house felt “hauntingly empty and lonely”. “I realised how lonely I was when it was the end of the day and I had a bunch of things to talk about but nobody to talk to,” he says.

While his daughter Karishma, a makeup artist, moved to Mumbai after marriage, his son went abroad. Shenava, ailing and alone, became “extremely anxious and at the same time his forgetfulness increased”. “He would often call me multiple times in a day just to make conversation,” says Karishma. “And despite hiring several house helps, none would stay because his frustration, frequent bouts of anger and paranoia would drive them out.”. While his children would visit him often, he soon realised that he needed someone who could love and trust him and he could do the same in return. “Most important, someone who could take care of me because I am not in good shape and I have nobody to look after me on a daily basis,” he says.

That's when a friend suggested second marriage. Shobha, said the friend, was from the same community, a widow without kids. It was too daunting to consider, he says, but he also knew he was too vulnerable and helpless. “I have three grandchildren and I wasn't sure how my kids would take it,” he says. Karishma accepted his decision.

While Shenava was seeking company, Shobha was struggling with a “deep sense of loneliness” post her husband's death. “She came with no expectations, except that her future will be secured after my father,” says Karishma. “She is warm and friendly, keeps herself busy with household chores and looks after my father. In terms of chemistry, both are chalk and cheese. They do not speak much, and neither are overly expressive to each other, but it is their presence that matters to them, more than anything else.”

Agrees Shenava, “She and I are two very different people. But now there is nothing we can do about it. We have to be together come what may and that's what matters. She is my support system. I cannot live alone anymore. It is frustrating and I can go mad.” But he has no unrealistic expectations. “We are not head over heels in love with each other, but we sure are there for each other whenever the need arises,” he says. “Just the fact that she's around has helped. Now, there's a spring in my step and I feel so much better.”

SENSE AND SENSIBILITIES

A lot got written about when model-actor Milind Soman, then 52, married Ankita Konwar, an air hostess half his age. It was his second marriage and hers first. Despite the age gap, they connected at an emotional level and “that is all that mattered”. For him, Konwar was the stability he longed for and, for her, he was that raging ball of energy and enthusiasm that her calm and collected self needed.

“It turned out we complemented each other just right,” Konwar tells THE WEEK at a suburban restaurant in Mumbai. Dressed in a casual top and denims, she is a frequent patron and warmly greets the staff as she calls for two cups of chamomile tea. “We connected on a temperamental level, at a time when I was emotionally vulnerable, having lost my boyfriend barely a few years before meeting Milind; it simply extended to a deeper subconscious level because the two of us were so much alike.” To an extent, that surprised her, too―that a man double her age could meet her at so many levels. He eats early dinner; he prefers staying indoors over attending late night parties; he is deeply enthused about the environment and loves to keep himself fit―all of this mirrored Konwar’s sensibilities. “He is more active on social media,” says Konwar. “He is also more jumpy when it comes to trying out new stuff, including high-on-adrenaline activities. But thankfully, both of us have a very small inner circle of people we call friends. We don't show off. We don't flaunt. We do not live the celebrity life. We eat home-cooked food every single day. And neither of us was ready for kids. That's what this marriage is about.”

But did she ever feel insecure? “I hold myself in very high esteem,” she says assertively. “Nobody can dent my confidence. But if you break my trust, I will let you go.” That Soman’s parents and grandparents on both sides were very well educated, rooted and yet had a liberal thought process was also a factor that clinched the deal for Ankita.

A day in their life begins with an early morning run together, followed by yoga and tea together before moving to their respective work commitments. Konwar is turning her passion into work―she has just started her first foray into running by holding the Invincible Women marathon in Mumbai. And the face of the event is none other than her husband. “I want to be known as a fitness entrepreneur because that is what both me and Milind are conscious about,” she says.

Age, she asserts, is really just a number. “Who better to tell you that than me,” she says. “My husband is a living proof of it.”

MAKING PEACE

“I never really thought there would ever come a time when we would be forced to address someone else as mother,” says Amrapali Chavan, as she talks about her father Atmaram Shinde’s second marriage to Sulochana, a year after their mother died in 2010. For Amrapali, 34, and her sister, Mrunali, 25, it was an “emotionally draining moment” to see their father tying the knot with a woman who was 15 years younger to him, and came with two daughters who were almost the same age as them. All Shinde knew was that he “felt the need for company and the urge to move on with life”. “When love knows no age, why do we gawk at couples who come together for love, so as to be able to walk into the shadows with a partner?” he asks.

Shinde, 65, and Sulochana, 50, have a son together, five-year-old Arsh. Both have grandchildren, too, from their respective daughters. Arsh is only a year older to Amrapali's son. “My son and my brother are almost the same age. This is just so crazy,” she says, animatedly.

The emotional toll on grownup children, resulting from a marriage between parents who have long crossed their prime, can be long-lasting and deep. “I remember seeing him breaking down very often in front of our mother's picture long after she was gone,” says Amrapali. “He was emotionally distressed and had receded into a shell. But I would always assure him that things would be fine and that he could count on us for anything and everything. But his friends and those in the neighbourhood didn't let him be. The society put so much pressure to remarry, that he just gave in. They kind of brainwashed him into thinking that he would die all alone with nobody to care for him.”

Around the same time, Sulochana lost her husband to a snakebite. Sulochana, too, was anxious about being single again, given that “society looks at such women in a different way”. She met Atamaram through a friend in their hometown of Alibaug, a few kilometres off Mumbai.

Amrapali was about 20 when her mother died and her sister just 10. “My mother's death in a way also brought all three of us close to each other and we assured papa that we will take good care of him,” she says. “But what mattered most to him was companionship and the love of a spouse. So, while he did get someone who takes care of him now, we feel as if our share of love has now gone to someone else.”

Shinde disagrees, saying it was not easy for him to marry again. “I was on the verge of an emotional breakdown,” he says. “But I took the plunge. I cannot live in my daughters' house. Right now, my wife and I have realised that there is a huge age gap between us and that is why we have issues understanding each other. Many times, we thought of quitting it altogether but the birth of our son has added a new meaning in our lives. I am not financially capable of raising a family all over again but I am fully able to provide with emotional support because I am in a happy place myself, no longer temperamental, irritable and fussy.”

As of now, Shinde's family's expenses are being met by his daughters. “It is difficult to refer to her as 'mom' because we are in the same age range,” says Amarapalli. “Just that she takes care of my father and has found a purpose in life in the form of a son is good enough.”

BITTEN BY THE LOVE BUG

In May 2022, retired cricketer and commentator Arun Lal, 68, made news for marrying his long-time girlfriend Bulbul Saha, 39, who was his friend's daughter-in-law. “I am quite literally god's child. I am very lucky in both love and health,” says Lal, a cancer survivor and a divorcee and a father of a son in his 30s. Saha says they share great chemistry “because he likes to father me, and I get to mother him”. “The age gap never becomes an issue because love triumphs all else and we both make each other happy in the mind,” she says. “I know I will never be mentally stressed or emotionally depressed in his company and that to me is very important.”

There have been times she says when she has changed her entire attire before leaving for a party only because he wanted it. “You know with age a person kind of becomes rigid and that does lead to conflicts between us at times, but then that's okay,” says Saha, a school teacher.

Saha and Lal met on a trip at a time when Saha was out of a relationship and the two of them hit it off instantly. Saha was under pressure to get married and Lal had to take the step, knowing fully well that not many would understand his intentions behind seeking a divorce and a remarriage, that too with a young woman who is his daughter's age. “I have done no harm to nobody,” says Lal. “Love knows no age, it is just that the society is so severely biased towards us silver splicers. It was mentally debilitating to gather the courage to go out in public because we did not want to hurt anyone. For a long time, our relationship was very discreet and my need for companionship was immense, especially since my wife had not been keeping well for years due to multiple strokes.”

Lal lives with both Saha and his first wife in a duplex bungalow in suburban Kolkata. “We take care of her together,” says Lal. “She has got nobody else in her life, except me. In fact, Bulbul (Saha) also shops for her, looks after her and, God forbid, if something were to happen to me then the only source of security for my ex-wife will be my current wife. I also believe that if I were to have a stroke tomorrow and were unable to move, then my present wife will take care of me and my wife like my daughter.”

Once their marriage became public, there were nasty comments, anger, disillusionment and breaking of ties but Lal has been an “eternal optimist”. “It is a beautiful feeling to be loved and to feel wanted in one's sunset years,” he says. “Because it is the loneliness that creeps in like a bug, not letting you be. Despite all the pressures, tensions and criticisms, we are steadfast in our loyalty towards each other and we will make this work.” The two are planning to have a child soon.

LOOKING FOR LOVE

Smita Vinchurkar, 48, flaunts a pixie haircut, a septum piercing and dons ‘cool’ outfits. “But these aspects are working against me when it comes to finding a partner for myself,” she says, over a cup of coffee at her home in Mumbai's suburban Prabhadevi. “I am not taken seriously and somehow my so-called type doesn't fit into this stereotypical image people have of a woman in her later ages.”

It is evening on a weekday and she is preparing to leave for her night shift (7.30pm to 4.30am) at a BPO where she has been working past year. Vinchurkar went through a “bad marriage” in 2004 while she was still in her early 30s and it took almost a decade for the divorce to go through. She used to live with her mother till her death a few years ago. And that is when she had to come face-to-face with loneliness. “It is my desperate desire for companionship and intimacy. But it is frustrating to even contemplate a serious relationship at this age,” she says, having tried her hand at various dating sites in vain. “In the Indian context there is only this one age bracket when women can think of relationships. After that, it is too hard for people to digest that even those nearing their 50s have the right to start a love life afresh. Men do not think of me as a girlfriend or a wife material; they think I'm easy. I was asked multiple times if I know how to cook and clean, if I know how to manage the house.”

That began affecting Vinchurkar's mental health, and she receded into a shell, seldom stepping out of the house. “I literally began questioning myself and asking if there was something wrong with me,” she says. “And then gradually I began to simply ignore the naysayers, the critics, those who shamed me for being single and ready to mingle at this age. I have begun doing positive healing courses and have claimed my life for what it is.”

Bold and enterprising by nature, Vinchurkar dabbles in multiple things―travelling, photography, soap making and her latest love―pottery. “It gives me immense peace to really learn new things and learn more about myself,” she says.

Vinchurkar feels she has been particularly “unlucky” in terms of romantic relationships so far, but is not ready to give up. “I will continue to actively look for a companion because the very thought of loneliness in my old age scares me to bits,” she says. “Although I have a very loving sister and her family that's very dear to me, there is an age gap of eight years. I do not want to die alone. I want someone to love me before I die. I hope society stops making it difficult for people over 40 to enter into romantic relationships that last a lifetime. We, too, can have it all.”

retinitis-pigmentosa-is-more-prevalent-in-India-than-the-west

Sat Jan 28 17:23:34 IST 2023

IN 2012, a study on the prevalence of retinitis pigmentosa in India was published in the journal Acta Opthalmologica. The study, which was headed by Dr Jost Jonas from Germany and Dr Vinay Nangia, director, Suraj Eye Institute, Nagpur, brought to light some crucial data―the prevalence of RP was about one in 750 in the adult population in India. The study also found that the prevalence was significantly higher in the rural areas of central India―1:372.

Compared with studies that were held in the west, both the numbers were shockingly high. For example, a 1984 study in Maine, the United States, had shown a prevalence of 1:4,756. Another study in 1984, in Birmingham, England, showed it to be 1:4,869.

Nangia tells THE WEEK that the higher prevalence of RP in India―and specifically in rural areas―may be because of more consanguineous marriages. “That is often the case, although we cannot be sure,” he says. The study, which had 4,711 participants, extrapolated that there would be approximately half a million Indians with RP and about 1.4 million Indians carrying the genes for RP. Nangia said the results showed that greater attention needed to be paid to it.

Dr Prakash Kumar Jain, an ophthalmologist with AyuHealth Hospitals, says that the symptoms of RP become apparent at the age of three or four only in severe cases. As the disease progresses, he adds, a simple retinal dilation can confirm it. Since it can be confirmed through a retinal dilation, most people do not go for advanced testing or gene testing.

However, Nangia insists that gene testing is necessary as there must be a system to understand and store the type of RP. He adds that “India is many years behind” in understanding the types of RP. “We need to identify which gene is defective in RP patients,” he says. “It is important because we are anticipating that gene editing and similar technologies [can be used to cure] almost all conditions, even chronic, and, to an extent, hereditary diseases. So, genotyping and phenotyping [would help patients if a cure is found].”

Nangia adds that newer gene editing techniques are specific. “You may get treatment for a particular kind of defective gene, but that may not apply to another patient with another [type of] defective gene,” he says. “So, genotyping of RP patients in India is perhaps one of the most important things that should be done.”

Jain says that while handling RP cases, the doctors can only offer hope. “We never tell parents that their child is going to lose vision,” he says. “We tell them that there is a lot of research going on. And, if they are lucky, there will probably be some cure in the future.”

But, for that to happen, India must first make a data bank of its RP patients.

retinitis-pigmentosa-family-edith-lemay-sebastian-pelletier

Sat Jan 28 17:52:20 IST 2023

Since March 2022, Canadian couple Edith Lemay and Sebastian Pelletier and their four children have been on the move, taking in sights and sounds as they tour the world. From the dunes in Namibia and valleys in Kilimanjaro to dancing with the Maasai tribals in Tanzania, hot-air ballooning in Turkey and dressing up as a nomadic reindeer herder in Mongolia, it has not been merely a travel for leisure but one with a purpose. For Lemay and Pelletier, this journey is all about creating visual memories for their children. Memories―snapshots of our lived experience―are essential as they help connect our past with our present and prepare us for the future. And, Lemay and Pelletier are hoping these visual memories, carefully curated by them, may come handy for the children when they face the dark days ahead.

“Three of my children have retinitis pigmentosa (RP), a genetic disease without any cure as of now,” Lemay told THE WEEK over a Zoom call from Thailand. “Our eldest kid, Mia, is 11 now. Then there is Leo, who is nine, Colin, who is seven, and Laurent, who is five. Leo is the only one who is not affected by RP.”

Retinitis pigmentosa is a group of rare eye diseases that affect the retina. It makes cells in the retina break down slowly over time, causing vision loss. It is a disease that people are born with. Symptoms usually start in childhood, and most people eventually lose most of their vision. The retinal cells called rods and cones die in patients with RP because of a mutation in one of their genes. In a majority of cases, rods―mainly located in the outer regions of the retina and responsible for peripheral and night vision―die down first. When more centrally located conduits also get affected, the patient with RP would face loss of colour perception and central (reading) vision, too.

Lemay and Pelletier observed the first symptoms of RP in Mia when she was just three. “We found something was wrong with Mia’s night vision,” said Lemay. “We observed that she was bumping into walls and furniture in dim light. We did not know what was happening.” As the problem persisted, the couple took Mia to an optometrist. Nothing specific was detected. On the optometrist’s suggestion, they took Mia to an ophthalmologist. The ophthalmologist, too, could not spot what was wrong, but asked the couple to get a gene test. The initial results of the gene test did not reveal any issue in Mia. “But then there was this research that was going on,” said Lemay. “They did this whole genome [testing] for Mia, Sebastian and me. It took two years before we got the results, and we came to know that Mia has this condition, that she is slowly losing her vision.”

The final test results came when Mia was 7. The genome test showed that the PDE6B gene was defective in Mia―the gene provides instructions for making a protein that is one part of a protein complex found in the rod. Soon, Lemay and Pelletier observed night vision issues in Colin and Laurent, too. “My children are slowly losing their vision from the outside towards the inside,” said Lemay. “So, in the end, their sight will be like looking through a straw. Their field of vision is shrinking over time.”

The couple’s initial reactions to Mia’s test result were “shock and disbelief”. “Because when you have kids, you just have an idea of how their future is going to look like and what is their life going to look like. But all of a sudden, you just need to rethink all that,” said Lemay. “At first, we thought there was a mistake. Then you get angry, you are looking for an answer everywhere. You get sad. But after a while we started to accept the reality.”

Some people with RP lose their vision more quickly than others. Eventually, most people with RP lose their side and central vision. The couple cannot tell for now how long it would take their children to lose vision completely. “It can be different for all my three children,” said Lemay. “It seems to be pretty slow. So they are expected to be totally blind by mid-life. But there is a possibility that they will be able to keep a little part of their field of vision.” Right now, their daytime vision is super good, said Lemay. “Their field of vision is still good. But their night vision is gone,” she said. “When the light is dim, they cannot see anything. So, we have to use flashlights when we walk outside in the dark.”

Over the years, Mia has developed a sensitivity to bright light, too, said Lemay. “Whenever she is out in a sunny setting, she needs to wear a hat,” she said. “Because her eyes start watering and also she has difficulty adapting.” Her eyes take some time to adjust if she moves inside from bright outdoors.

By the age of 40, most patients with RP reach a level at which they can be classified as ‘legally blind’. With reduced visual acuity and a narrowing field of vision, performing daily activities may become difficult. Patients with RP may also experience a loss of independence. This may lead to anxiety and depression and reduced quality of life.

But Lemay is not one to brood when faced with a problem. When she realised that her children were slowly going blind, she started thinking about what she could do to help them cope. “I first thought about providing Mia with some tools that would help her in the future,” recalled Lemay. “I also thought that she could learn Braille at school.” But the specialist at school told Lemay that Mia’s current vision was way too good for her to learn Braille properly. Instead, the specialist advised Lemay to fill her visual memory, so that Mia will have a mental image to refer to even if she loses her vision. “That is when it clicked,” said Lemay. “Instead of showing an image of a giraffe or an elephant on a book or TV, let’s go and show real elephants and giraffes to our children.” Thus started the family’s planning for a world tour.

The original idea was to start the journey from their home in the Quebec province of Canada by July 2020, but then the pandemic happened. “In 2020, we wanted to cross Russia, take the Trans-Siberian [rail], cross Mongolia and then go to China,” recalled Lemay. “But the pandemic made us rework our itinerary so many times. In the end, we just left without any itinerary. We looked at which countries were open. Africa was open then. So, we booked tickets to Namibia and finally left [Canada] in March 2022.”

Lemay, who used to work in health care logistics, and Pelletier, who was working in finance, resigned from their jobs before the trip. While they had saved for the trip, their savings got a boost when the company Pelletier worked for and had shares in was bought. The family has already touched three continents and 12 countries on this trip.

The travel plan has accommodated things on the children’s bucket list. “Mia loves horses, so she was excited about horseback riding in Mongolia,” said Lemay. “Once she did the ride, she became so emotional.” Leo loved the animals in Africa and Colin found the train journeys in Tanzania special. An experience that excited both the children and the parents alike was the hot air balloon ride in Cappadocia, Turkey. It has become Laurent’s favourite memory so far. “We got there before the sunrise and walked in really dark fields [with the flashlights on],” recounted Lemay. “And, all of a sudden, we saw these giant hot air balloons taking off. It was like giant lanterns soaring all around us. We told the kids that we would go see them take off, but cannot afford to get in them. They were okay with it. They were excited to see them take off. But when we told them that we were actually going in it, they were in heaven. So, we got in the hot air balloon, taking off slowly as the sun was rising from the horizon. Along with us were hundreds of other hot air balloons. The colour was all pinkish and it was just amazing.”

The family spent their Christmas on a remote island in Cambodia. A few of their friends from Quebec flew to the island to celebrate with them. There, they made a Christmas tree with a palm tree branch and put some lights on it.

But the day they would love to celebrate the most is the day when medical science finds a cure for RP. The advancements in gene and cell therapies give hope to lakhs of families. According to a research paper published in the journal Clinical Ophthalmology in 2022, Luxturna (voretigene neparvovec-rzyl) is the only approved therapy for RP as of now. But it is only authorised for treatment of a small subpopulation of patients that has the mutation in the RPE65 gene. It is estimated that those with defective RPE65 genes represent only 0.3 per cent of the total RP cases. So, most patients are limited to the best supportive care, including reliance on vitamin supplements, protection from sunlight and visual aids.

The research paper says that 131 drugs are in all stages of clinical development for RP. Around 50 per cent of these drugs are related to gene therapies and cell therapies. Gene therapies target non-functional photoreceptors, making them more suitable for early to mid-stage disease. In gene therapy, the idea is to treat the disease and restore vision by introducing healthy genetic material into cells to produce a functional protein or compensate for a diseased gene. Gene therapies are tailored to specific gene mutations, increasing their effectiveness and allowing for personalised treatment. However, in the advanced stages of the disease, conventional gene therapy may not be effective as the target cells will have largely degenerated. Early referral, diagnosis and gene testing are crucial for patients with RP to ensure that they receive treatment within the limited window for a successful gene therapy.

In contrast, cell therapies can be applied throughout the progression of the disease, as they are independent of the presence of photoreceptors. In cell therapies, there are two main therapeutic goals: either to preserve and restore the function of dysfunctional cells or directly replace dead or dysfunctional cells with healthy ones. Around 13 gene therapy drugs and two cell therapy drugs are in the later stages of development.

Though these developments are happening in labs, Lemay said that she was preparing her children for a worst-case scenario―a future where no cure is developed for their defective genes. She explained that the trip is in a way helping in that preparation. “One thing that they are going to lose is that wide field of vision, so we are trying to stay in nature where [they get a chance to experience] the field of vision in a wide, open space,” she said.

In the process, Lemay realised that children live in the moment. “They do not do this trip with the urgency to [make or] keep memories. They are just enjoying the moment,” she said. “You want them to look at certain beautiful structures or temples, but they may see a nice and cute stray cat and for them, that is going to be the most beautiful thing over there. And, that is okay. What they think is beautiful is as important as what we think is beautiful.”

Resilience is another thing that Lemay expects her children to develop through this journey. “Because, with RP, what happens is that they are going to lose vision, but slowly. So, it is going to be constant readjustment and adaptation in their lives,” she said. “For example, they may be able to drive for some time, but after a while they are going to have to let that go. And, they may require to use a cane or a guide dog. There is going to be falling, and they have to get back up and find a solution.”

The family has kept the trip low budget, avoiding big hotels and first-class flights. “When you travel like that, it can get uncomfortable,” said Lemay. “We may face hot weather; we can be hungry or tired. So, children need to adapt all the time. I want them to learn that a bad situation will eventually end, and things will get better.” For instance, they had an uncomfortable experience while travelling from Zambia to Tanzania. They were supposed to take a train from Lusaka, the capital of Zambia, but a bridge had collapsed and trains had stopped running. So, they took a bus. “It was supposed to be a 12-hour journey, but it ended up being a 16-hour ride,” recalled Lemay. “There were just three stops in that journey. And, one of the stops was a field. We were asked to go to the field [as there were no toilets] and come back within five minutes. And, the kids said it was the worst bus ride of their life. And, I think they will remember it for a very long time.”

The family is currently in Laos. Though the children love travelling, the family plans to be back in Quebec before the school year is over (in June) so that Mia can say goodbye to her friends before she starts high school (grade 7). Those are also precious moments that Mia wants her brain’s memory card to store.

LET'S GO!

This is the beginning of the adventure, we're diving in! We have butterflies in our stomachs, weak legs, but we're so excited! We're sleeping in Toronto tonight, then taking a 13-hour flight to Addis Ababa (Ethiopia), then another 5 hour 30 minute flight to Windhoek (Namibia). And we have a tight connection that we definitely don't want to miss, otherwise we'll be stuck in Ethiopia for 2 days.

IT'S TIME FOR AFRICA

Our visit to a Maasai village really impressed the children, especially Laurent. He told us he would be a Maasai when he grew up. He can't wait to be 10 years old to drink cow's blood mixed with milk because it will make him strong. The visit is well-choreographed for tourists―they dress you up, invite you to participate in a welcoming dance with the whole village, light a fire, visit a house and do archery. It is still really interesting to learn about their way of life. And their singing, dancing and jumping are truly impressive.

SUN, SAND AND SIGHT

Sossusvlei is one of the main attractions in Namibia. It is a long strip of clay and salt in the middle of spectacular red dunes. These dunes are among the highest in the world. At the end, surrounded by dunes, there is Dead Vlei, an old marsh that, cut off from its water, has turned into a tree cemetery. These sun-burned tree skeletons form a strange and contrasting spectacle with the red dunes and white ground. The best time to see the dunes is at sunrise and sunset, for the light and the play of shadows, but also because during the day, the heat is scorching. As a good tourist, we got up before dawn to climb the famous Dune 45. Well, already getting up early for my children is not a joy. Climbing a steep slope in the sand, not easy, especially at that scale. Watching a sunrise for children who are sensitive to bright light, not the best idea. And, of course, the wind joined in to make everything pleasant. In short, the first photo (above) summarises our morning well! I managed to take some good photos, but this one is definitely my favourite. Fortunately, we took it again at sunset on Dune Elim. The climb was endless with its 12 false summits, but on the descent the colours were so intense that it felt like a painting.

positives-and-negatives-of-docfluencer-trend

Sat Dec 24 15:44:25 IST 2022

WHEN COVID-19 brought the world to a standstill, social media channels became popular as a source of entertainment and information. And as the air of scepticism around Covid-19 got dense, people frantically looked for medical advice online to steer clear of the disease. What emerged as a saviour during this period was a group of doctors who turned social media influencers. Known as ‘docfluencers’, these medical experts addressed people’s questions while giving them emotional relief during the pandemic.

While patients started the trend of looking online for medical advice, doctors, too, are taking to the platform in a big way. These docfluencers are demystifying health care and dispelling myths by bringing expert advice to one’s home. They talk about the nature of the disease, its symptoms, and tips for prevention.

Facebook, YouTube, and then individual WhatsApp groups are the most popular among doctors. In certain areas like psychiatry or nutrition, Twitter is commonly used. Instagram Reels has become a new favourite for these influencers as it is a growing space and is easy to access.

There is a flip side, though. Today, anybody can go on a doctor’s Google page and give a bad review and rating; these ratings are often taken seriously. There needs to be some way to tackle false ratings.

There is nothing more powerful than patients’ word of mouth; when it comes to trusting somebody with your own life, nobody really believes a YouTube video or a Facebook ad. People ask around and other patients’ personal experiences really add to a doctor's reputation. Thus, doctors must concentrate on the helping part, and must not engage in sensationalism through false claims to gain popularity.

The advent of 4G helped docfluencers reach remote areas where access to quality health care is often a challenge. Through this, medical experts in Tier I cities reach audiences in Tier II and III cities. Though social media cannot help with lifesaving surgeries and interventions, it can raise awareness about the nature of the illness, thereby helping patients seek medical care at an initial stage. For example, while talking about breast cancer, doctors talk about the earliest sign of breast cancer, which is a lump that is painless. This information leaves a mark on the viewers' minds, making them more cautious.

Although largely beneficial for the audience, social media can lead to time management issues for doctors, with them handling their online presence and offline practice at the same time. Instead of using social media as an advertising tool, docfluencers must stick to their initial role of disseminating appropriate medical advice. Patients need to use their wisdom, and trust only reliable sources of information when seeking a doctor and their expertise.

―The writer is head, surgical oncology, Fortis Hospital, Mulund, and Fortis Hiranandani Hospital, Vashi.

docfluencers-shares-their-experience-and-motivation

Sat Dec 24 17:29:03 IST 2022

Not only do they take on influenza―thriving this season―doctors have now become influencers, too. Ever since the coronavirus brought doctors and patients closer than ever, these 'docfluencers'―many of them specialists―have been giving out advice on their popular social media handles. Followers can reach out to them any time, without waiting lines and consultation fees, and ask about anything medical on their mind.

It is also a way for doctors to show off their creative side―get in front of the camera, shoot, record, edit and post engaging content―at the same time managing an ever-increasing patient load. The urge to connect with a wider audience, the instant gratification that comes from a spike in follower count, and the opportunity to be seen, to demystify medicine and to establish a unique digital identity have led a number of doctors to create their own brand image on social media. They bring in their expertise and knowledge to millions of worried minds, especially at a time when genuine medical advice is hard to come by.

But there are pitfalls, too. Helen Partridge of the University of Southern Queensland, who published a research paper on ResearchGate, identified the potential benefits and challenges of physicians adopting social media. The benefits―networking with the wider community, sharing knowledge and personal branding, among others. The challenges―maintaining confidentiality, finding time, workplace acceptance and support, and information anarchy.

It takes time to balance both and you learn on the job.

Docfluencers are a growing breed in India, too, especially with the proliferation of mobile phones and cheap data in recent years. Here are five medical experts who share their motivations for getting on to social media and what keeps them at it, day in and day out.

Dr Abby Philips, hepatologist, Rajagiri Hospital, Kochi (@theliverdoc)

In 2019, Abby Philips published a paper in the Indian Journal of Gastroenterology. It was based on a patient who he claimed died of liver failure because of a drug sold by an alternative medicine company. Apparently, the drug contained contaminants, toxic herbs and heavy metals that damaged the liver. It was the first such reported case from the Asia-Pacific region.

The moment the study was published, the company filed a defamation suit against him for $2 million and allegedly got the paper removed from the journal without his permission. Philips, who had till then been largely passive on social media, tweeted the entire episode in a long thread, highlighting the plight of a whistleblower who faced the “wrath of a mighty herbal medicine company”. The post went viral within minutes and Philips, for the first time, saw his follower count rise from a few hundred to four figures in hours. It was a high like never before; a reaffirmation that a world out there was listening and wanted to know more. And so, turning “aggressively active” on Twitter, the liver doc began posting long threads on “evidence-based stories” of how real patients whom he consults became “victims of liver failure as a result of consumption of alternative medicines”. Today, more than 71,000 people follow him on Twitter, and he has just signed a book deal―he will be writing about “hepatology and the harms of alternative medicine on the health of the liver”.

To do all this while also being a senior consultant hepatologist at Rajagiri Hospital in Kochi has not been easy. He practises in the day and turns researcher and scientist at night. Because it is at night that the energy level to prove a point is at its peak, he says in an interview. It is the time best used for preparing content, say a video on debunking myths around the use of papaya leaves for increasing platelet count or data analysis for a research paper on liver damage resulting from “contaminated herbal drug use”. Two meals a day, five hours of sleep, loads of coffee, an eight-and-a-half hour stint at the hospital and the “desperate urge to inform and educate patients” keep Philips going. The precious minutes he gets in between tasks at the hospital is when he goes through his timeline to like, post and retweet.

“I believe that my content has to be interesting and factual,” says the father of two daughters and a son, aged nine, five and three. “Every time I come across an interesting case study in my routine practice, I simply tweet about it. That could range from three tweets a day to maybe one or two tweets in three to four days. It all depends on the content I have. I do not follow the herd mentality of adhering to volumes.”

He learnt this over time. Early on, he would spend every waking minute browsing through his timeline, obsessing over the number of likes, comments, shares and the irresistible follower count. “My wife was sick of it and called me an addict. It was difficult to get over it, but I have finally done it,” he says, as if heaving a sigh of relief.

If Twitter is an outlet, YouTube is a different animal altogether. “I write the concept, shoot, record, edit and post the videos all on my own, at least twice a month. I am self-taught; all you need to do is learn from YouTube to post on YouTube,” he says, laughing. This, he does from a part of the apartment converted into a studio space where he has his light and sound equipment and “pin-drop silence”.

Though his follower count keeps growing, Philips has also published 16 research papers this year alone. “It is a thrill to be so involved and so active. It does not burn me out. If it does, I just play games on my PC,” he says.

Philips often gets trolled and is threatened with lawsuits. But that is what keeps him going. “There was a time when I used to engage with trolls, but I see there is no point in responding to those who [attack] me for my evidence-based takes, but do not substantiate their claims with evidence of any kind. They are simply science deniers.”

Dr Agni Kumar Bose, dermatologist, dermatosurgeon and sexual health specialist, KEM Hospital, Mumbai

Dr Agni Bose is a skin specialist with a difference. He consults on dermatology offline and counsels on sexual health online. This is because his degree says “dermatology and venereology”, and he takes that quite seriously. “Why do doctors brush this aspect aside? Despite having studied venereology (it is part of the dermatology course), there is so much stigma and shyness within us doctors that we do not want to see those patients,” he says. “[We] rather focus on rich celebs for fillers, Botox, cosmetic procedures and more.”

A senior consultant at Mumbai's KEM Hospital, Bose sees himself as a “regular doctor” who tries to make medical education fun and accessible, busting myths related to issues that are “taboo” and routinely brushed under the carpet. Call him an influencer and he cringes. “Medical content creator is a better term,” he says. That is his second job, one that he gets down to immediately after returning from hospital every night. He takes on topics like 'How to treat stretch marks', 'Should women shave?' and 'How to cure dandruff' in Reels that last only a few seconds. The snappy videos have earned him more than 1.3 lakh followers on Instagram, and the videos on 'Manicure and pedicure,' and 'How to wash your face' have millions of views.

With studio lights, a high-end camera and a lot of dramatic flair, Bose churns out videos that are “gripping and fun so as to capture attention in the first three seconds”.

While the engagement on social media is in itself addictive, it is also an escape from the stress of working in a government hospital, attending to patients, doing surgeries, delivering lectures to students and attending emergency calls.

Bose first started putting out content about 14 months ago, immediately after he became a consultant after his MD exam. He downloaded editing software, took tutorials online, taught himself the tricks of the social media game and gradually got in place an editing team. He is serious about being good at it. “After all, I am going to be doing this for a lifetime,” says the son of two doctors based in Doha. “Work from 9am to 4pm, and then create content because this industry has just started. The scope is huge.”

Apart from all this, he is also pursuing a fellowship in dermatosurgery. “At times it is not easy to create fresh content every day because there is just no time,” he says. “That is when pre-recorded content comes handy and can be posted in batches.” At the moment, he is uploading videos from his fellowship to keep the page active.

The crucial part of being a doctor on social media is that potential patients find it easy to approach you, which translates into OPD patients, too. The reverse is also true. “I learnt early on that to excel as a docfluencer, I have to be good at what I do in the OPD,” says Bose. “That is when they will start
taking me seriously on social media, too.”

He was surprised that men came to him saying that, because of him, it had become easier for them to access answers to sexual health problems. “Dermatology and sexual health are specialised areas that are expensive for a patient, especially in non-metros,” he says. “So, through these videos, I am reaching a far bigger audience across the country and outside, and it is helping everyone. Also, I saw this huge gap in the area of counselling for sexual health, especially for men. I myself had to look up YouTube to learn how to wear a condom. The point is to make talk about reproductive health as commonplace as talk about stomach ache.”

His popularity has earned him offers from numerous brands, ranging from skincare and haircare to those selling sex toys. He began monetising after he reached 10,000 followers; his first brand collaboration came 11 months into his online journey and the image he built helped him make money offline, too. “The best part is that I do not even post every single day; it is thrice a week,” he says. “I do not have the kind of time to do this daily and there is also no point in bombarding the audience with too much.”

Dr Sid Warrier, neurologist, Wockhardt Hospitals, Mumbai

In July, Dr Sid Warrier posted a video on YouTube titled, 'Why do we enjoy kissing?' Dressed in a navy-blue tee, Warrier explained the neuroscience of kissing in 60 seconds to his near 84,000 followers. A neurologist at Mumbai's Wockhardt Hospitals since 2019, Warrier posts videos that help people “understand their brain better”. A video he posted six months back, 'A scientific explanation on how exercise affects your brain', got 14,000 likes for its directness and engaging nature. He had started the channel ten years ago to share his interests, including poetry, ghazals, lyrics and soothing guitar tunes.

Born to a physician father who owns a nursing home in Mumbai and a mother who teaches Carnatic music, Warrier turned into a scientist with a creative mind. As he pursued his MBBS and MD at KEM in Mumbai, followed by a masters in neurology from Lucknow, he continued to indulge in art. He wrote lyrics and started a poetry club, played music to an audience of friends and students, and posted his couplets and ghazals on Instagram.

His “real debut” on social media was serendipitous. In 2020, during the lockdown, he suddenly found a lot of free time as neurology took a backseat to the virus. He sensed an opportunity―online classes for medical students on neurology and neuroscience. He had about 200 followers on Twitter and 600 on Instagram, most of them colleagues and friends. But the lectures, explaining why we do the things we do, became an instant hit.

His channel really took off when, one morning, comedian Tanmay Bhat invited him to do livestreams on medical topics. They did one on the neuroscience of humour and why we take offence, and Warrier's subscriber count shot up from 800 to 2,500 in two minutes. “It was Tanmay who showed my Insta page on his livestream and whoa! It was a high I had never experienced before,” he says. He currently has 1.39 lakh followers on Instagram.

Warrier's social media handles became his playground, an outlet for poetry, podcasts, neuroscience, live gaming and more. Every day he would go to work; every night he would be on social media. “In the past six months, more and more people started coming to my OPD for consultation,” he says. “While leaving, they would say, 'By the way, I saw your Instagram and your videos'. Nowadays, everybody looks up the doctor and the first links that come up are social media handles. If somebody sees my videos before they come to me, the trust is stronger and they are already thinking favourably of me. So yes, having a public face definitely helps.”

Juggling multiple things at a time, believes Warrier, comes easy to those who have done residencies in government hospitals. “It teaches you everything you need to know about hard work because it is almost like a war zone,” he says. “But the only advantage is that you never feel overworked in your life. So I did build resilience as a survival hack early on.”

After putting up a lot of content initially, Warrier has slowed down. “There was a time when I posted one reel every day for almost two months,” he says. “But now that work in the hospital is also increasing, I have taken that pressure off myself. I still think of myself as a doctor who shares things on social media because he wants to talk about it. I do not follow algorithms.

“Earlier, on the way back from work, I would read about stuff and note down topics to make Reels on, come home, record, edit and put it out. Soon, it got so frustrating that I realised I needed a team.” He now has three freelance editors. “Everybody who is successful and consistent on social media has a team. Now I record once or twice a week, and post three to four times a week on Instagram.”

Warrier has a studio space at home where he records. It is him with his laptop, a USB mic, camera and ring lights. He records on Wednesday mornings when work starts late and has started making money from YouTube. “Once you cross 1,000 subscribers and 4,000 view hours, YouTube starts paying you,” he says. “It runs ads on your videos and gives you a percentage of that. Money really started coming in in 2020 because I started livestreaming. It could be anywhere between Rs10,000 to Rs40,000 to lakhs a month.”

Recently, Warrier decided to shed all the other interests on his YouTube and concentrate on neuroscience. “This is a serious business,” he says. “Content creators are not individuals, but a production house in themselves. The future for me is digital, and if doctors feel that their jobs are completely safe, they are mistaken. Very soon precision tech, which will be algorithm-based, will replace us because science is evidence-based.”

Rebecca Pinto, physiotherapist, Mumbai

Pinto's Reels provide answers to those physiology problems that are too small to see a doctor or not worth the consultation fee. The examples―'Do you have a frozen shoulder?', 'Does coffee have any side effects?', 'Are you someone who is always typing or writing? Here are five exercises for your fingers.'

To her 2.3 lakh Instagram followers, Pinto, a physiotherapist from Mumbai, comes across as a young, good-looking medical expert who simplifies some of the most common problems they encounter in daily life. On an average, her videos get views that run into five figures; the one on the benefits of bathing with cold water reached a lakh.

As with most others, Pinto, too, started “influencing” during the pandemic. “We were all in a lockdown and, being the workaholic that I am, I was looking for more ways to work,” she says. “So, I created my account and it helped me reach out to people who were looking for online consultations. As I understood Instagram more, I started making informative content that is shareable and fun.” She continues to share at least one post every day. “Luckily, I am very organised professionally,” she says. “I shoot content in a batch once or twice a month and trust me it is so much easier that way. Sometimes I find topics from conversations with patients, too. I just note it down and eventually, whenever the shoot is scheduled, it is executed. I spend about three hours once in two to three weeks to shoot content. Creating ideas and editing takes most of the time.”

As of now, Pinto has been spared the trolling. “I was warned that I will get DMs and comments that won’t be pleasing, but that has never happened,” she says. “The comments are appreciative and sweet. The pressure is honestly a lot because there is constant feedback from people who want to see you grow and know your potential. Also, trends keeps changing and by the time you understand something, something new is already here. We are all just constantly learning.”

The best part, she says, is that it does not take away from patient care. “There is so much that can be done online in terms of treatment and we only realise it when we start executing it,” she says. “Also, it does not restrict you to a certain area and we can consult anyone with internet access, which is amazing.”

Dr Arvind Bhateja, neurologist, Sparsh Hospital, Bengaluru

Dr Bhateja's first video on Instagram is dated October 8. In about two months and around 25 videos later, he has earned close to 1.9 lakh followers. Having studied at M.S. Ramaiah Medical College in Bengaluru and Seth G.S. Medical College in Mumbai, Bhateja's dream of becoming a neurosurgeon was realised at NIMHANS, Bengaluru. After close to three decades in the industry, Bhateja recently decided to share his experience and knowledge with his followers on social media. This is because medicine is not the only thing he is passionate about; technology has been at the heart of everything he did as a neurosurgeon.

“My life is not all about surgery and medicine,” he says. “One of my biggest passions is the sport of cycling. I cycle, follow professional cycling and train for and compete in races through the year. Coffee and reading also keep me occupied.”

His videos include topics like―'You have a severe headache... is it something to worry about?' and 'You have a brain tumour... are you going to die? Most probably not'. In another video, he talks about how 95 per cent of all headaches do not have any serious underlying condition and follows it up with warning signs for headaches. He always ends with, “For more information, follow my page.”

His videos, which have around 7,000 likes on average, are short, crisp and to the point. Bhateja, in a gown, sits on a chair and speaks straight to the viewer. A skeletal frame hangs behind him.

Every morning he cycles to work in an apron and a face mask. This is followed by OPD consultations and surgeries, and social media in between. Recently, he hosted an Insta live session with a cardiologist and a sports physiotherapist to understand the impact of running on the heart.

“Never in my wildest dreams did my team and I expect this channel to attain this follower count this quickly,” he says on his page, thanking his followers for “all the love”.

“Informative, interesting and actionable content” is the hallmark of his page, through which he hopes to “add value and educate people to lead better and healthier lives”.

dream-come-true

Sun Nov 27 11:53:43 IST 2022

It is 3am and suddenly, unexpectedly, I am alert. Not just mildly alert, but very alert―the kind of alert that comes from hearing an intruder or waking up from one of those nightmares where you are redoing your A-levels.

Beneath me, the sheet feels icy. To my right, there is a humming sound, not loud, but with just enough starting and stopping to ensure I can never quite block it out. I roll over and put the pillow on my head. The noise is quieter, but now my head, deprived of the insulation of the pillow, is icy too. Icy and alert.

That is when, beside me, I hear the voice of my wife. She is also alert. Unexpectedly alert for 3am. To have one alert person at 3am is a misfortune. To have two?

There is only one conclusion. “Did our bed just wake us up?” she asks. In the corner of the room, the bed’s control unit, black and sinister, hums and vibrates, oblivious.

Sleep has become serious. Gone are the days when CEOs boasted of regimens that involved 4am starts and strong coffee. Sleep is back. Eight hours is the new five a day. Good sleep is the new good diet. Or perhaps the new fitness. Or both.

Online, you can find advice on exercise to help you sleep, or sleep to help you diet. We talk about sleep hygiene and sleep fitness. Sleep, says Matthew Walker, professor of neuroscience at the University of California, Berkeley, and global publishing sensation, is “your superpower”.

There is now a long list of products designed to help you rest easy. Today’s troubled sleeper can buy sleep-easy pillows and sleep-easy mattresses. There are pillow sprays to help you fall asleep and natural-light alarm clocks to help you wake. Your phone offers a bedtime mode to bathe your eyes in warm yellow light, allowing you to select from a range of sleep-tracking apps while not experiencing the blue glare that, some scientists claim, wakes you up.

It feels as if sleep has, like calories and 5k running times before it, become another metric, a daily score to be improved. And if that is indeed the case, then my sinisterly humming mattress cover―or, to give it its full honorific, the Eight Sleep Pod Pro―is the Nike Vaporfly of sleep, the ultimate application of technology to sleepology.

The inspiration for it is simple. “When it comes to beds, nothing has really changed since the Middle Ages,” says Matteo Franceschetti, founder of the company, which now claims 80,000 satisfied sleepers, among them international-standard athletes and the Mercedes Formula One team, including Lewis Hamilton.

Several hundred years ago, humanity came up with a device that was level, that had the requisite squishiness and we believed we had the concept that was “bed” nailed.

Franceschetti thought otherwise. “It doesn’t make sense,” he says, bemused. Many others agree. This mattress cover, probably the world’s most expensive mattress cover at ￡1,545 (approximately 01.5 lakh), is loved by sportsmen and women, as well as Silicon Valley early adopters. Their rationale is simple. Why leave such a crucial bit of technology that we use for a third of our daily life untroubled by the 21st century?

But are they right? Most furniture hasn’t changed much since the Middle Ages, but no one is lamenting the lack of Bluetooth connectivity on their table or that there isn’t an app to control their sideboard.

The key difference, Franceschetti argues, is that sleep works best when the thing you are sleeping on adapts.

As all schoolchildren know, body temperature is 370C. This is not the whole picture, though. It is an average. Over the course of a night, your body temperature naturally changes. By evening, it is typically 37.50C. At 4am it is a degree lower, at 36.50C. For women going through menopause, variations can be greater still.

What if a bed could accommodate this and change the mattress’s temperature in the knowledge that the temperature you find comfortable when you are going to bed is not the same as the one you will find comfortable in the middle of the night? Unlike other mattresses that promise temperature controls, and definitely unlike the electric blankets that led to the 1970s fad for spontaneous human combustion stories, Eight Sleep’s version will adjust to you. When you lie on it, it notices. When you breathe, when your heart beats, when you turn over, all these movements, big and small, are logged. The next morning, it will tell you how well you slept, how much was deep sleep, how much dreaming sleep and how variable your heartbeat was, which can be a sign of potential health problems.

It is about more than metrics, however. By attempting to work out your phase of sleep, it will change the temperature accordingly by pumping in hot or cold water to a thin membrane of tubes―and do so differently for either side of the bed.

Or, as Franceschetti puts it, “We actually need different environments, even if we’re sleeping on the same bed. And technology can do that for you.”

With a bit of time, he assures me, it will learn my habits. With a bit of tweaking, the noise will go. And then, “You will wake up more energised and more ready for the day.”

It is, for many, the ultimate promise: that somehow, we can guarantee a good night’s sleep. Sleep is the worry of our age. Most of us get too little. A third of us have trouble getting it even if we are in bed. We all think we can do it better.

Once, we would have turned to pills. Then we looked to habits, to the perfect mix of exercise, diet and night-time routine. Is this the ultimate solution? Is the last piece of the puzzle a bed?

――――――――――

For his part, Russell Foster, professor of circadian neuroscience at the University of Oxford, isn’t convinced that the relentless focus on our dimmer-switched, iPhone-monitored, scheduled slumber is always helping. He hasn’t tried a temperature controlled bed, although he thinks that, theoretically at least, it could have benefits. One of the key reasons people have trouble sleeping is that they start too warm. What seems comfortable when you get into bed is too hot for what you need later on.

Foster, who has written a book about sleep science, Life Time, thinks our general sleep obsession can become counterproductive. “Of course, now there’s all this increased awareness about the importance of sleep,” he says. This is great for his discipline and, he says, he is all for people looking at what they can do better and changing their habits to get a better night’s sleep. “But it’s now come with this massive baggage of anxiety about it.”

Sleep has become a proxy for success, to be measured, ranked, improved. You snooze, you win. I’m not winning.

――――――――――

Night two and I am on my own. My wife, who is not contractually obliged to sleep on a Wi-Fi-enabled fridge lilo, has abandoned the bedroom to sleep in the same room as our toddler, whom she now considers less likely to wake her. Unlike me, she does sometimes have problems with sleep. In that context, she finds the idea of having her sleep tracked or “judged”, as she puts it, deeply unpleasant.

“I don’t want sleep to be a test,” she says. “First, our bed wakes us up, then it tells us how badly we are doing. We are being gaslit by our bed.” So it is that my conjugal relationship is with the bed. It has taken on a persona in my mind. When I first get in, it is a pleasant, warming persona. Warm, but not hot. I feel welcomed by my bed.

I know that very soon it will chill to suit my need for a cooler environment as I enter sleep. Five hours later, when I awake from a dream of sleeping on chilly concrete, I feel less welcomed. Like Hal, the computer in 2001: A Space Odyssey, my bed doesn’t hate me. It doesn’t love me either. It is icily indifferent. If I died, it wouldn’t care.

My previous bed would not have cared either. But then again, my previous bed didn’t make decisions about how comfortable it felt I should be or tell me afterwards that I had failed to sleep in the manner it expected from me. My previous bed was simply a bed. Again, I cannot get the humming out of my head.

When I meet Franceschetti, 40, to talk about this bed, which has had ￡125 million in venture capital backing, it is in the waking dreamlike state I remember from the first few weeks of having a baby, but he has impressive statistics to convince me that I should persist.

Because they monitor everyone’s sleep, he says, they can see how customers progress. Sleep quality, they say, improves by about a third. People experience 10 per cent more deep sleep and fall asleep 44 per cent faster. Heart rate variability improves too. They can see on their app that customers who buy it keep using it.

We are meeting in a London hotel, both of us fortified with a coffee. Alex Zatarain, his 33-year-old business partner and wife, has come over with him, on a visit from their Florida base.

Faced with such persuasive evidence, how can I give up now?

Night three. It is, once again, 3am and I find myself unexpectedly giggling at the absurdity of it all. It is dark. The world outside, a world sleeping on its old-fashioned, medieval, analogue mattresses, is asleep. And me? I am awake. I am rebooting my bed.

Before going to bed I had adjusted the controls to introduce a less precipitous drop in temperature. I had “primed” the bed several times to remove any air bubbles that increased the noise of the pump and the volume did indeed drop.

But I wake up anyway, this time too hot. And now I find I can’t cool the bed because it has lost Wi-Fi connectivity. As a pixel progress bar makes its way slowly across my iPhone screen, as I squint at it through my peripheral vision to avoid the glare, another thought strikes me―the sort of thought that tends to strike in the early hours of the morning.

In my day job I write about science. Just a few days earlier, I had covered a paper that raised questions about the Russian Covid-19 vaccine and the Russians had, in turn, sent a very cross letter threatening to take me to court.

Is it possible to take control of a bed?

Do I want to be in a situation where a foreign state could hack my bed? If Wi-Fi-enabled beds become popular, could they constitute critical national infrastructure? What harm could you do as a state actor able to deprive an entire nation of sleep?

The progress bar passes the 50 per cent point, but I am tired of waiting for the Wi-Fi to reboot. I am just tired, full stop.

I believe Eight Sleep’s data. I believe that, for many people, sleep can be a trial and torment, a torment that can be alleviated through technology. For me, though, the bed is a solution in search of a problem. Worse, just at this moment, it is a solution in search of a problem that has caused its own problem. My wife has explained, sternly but fairly, that it is me or the bed.

It is time to assert the primacy of humanity over robots and exert the ultimate sanction. I walk over drowsily to the wall and pull out the plug. And then I settle down, at long last, for a good night’s sleep.

test-doze

Fri Nov 25 19:43:11 IST 2022

Sleep, the dark sea that I struggle to cross every night, leaves me exhausted. The dreamless, never-ending nights fill me with dread.

I drifted off to sleep in the wee hours of morning, only to be woken up by the scary scream of a woman in a nearby slum. I said a little prayer for her and tried to go back to sleep. A stray dog that would not stop barking kept me awake.

They say counting sheep helps you fall asleep. I try that, only to be reminded of a loved one whom I had lost recently―one who kept lambs as pets. And I am wide awake.

An insomniac’s nights are dull and dreary. So are their days.

I was a bit anxious as I headed to the sleep lab in Apollo Hospitals at Bannerghatta, Bengaluru. Someone who cannot sleep at home may find it even harder to fall asleep in a lab, with electrodes attached to your body.

It turned out that my thinking was partially wrong.

Dhanush B., the technician at Apollo’s sleep lab, insisted that I have my dinner at 7:30pm. I ended up skipping it, as I had to catch up with a group of friends after work. I had two cups of coffee in the evening.

I reached the lab by 8:30pm. As I was preparing for polysomnography, a study used to detect sleep disorders, Dhanush walked me through the process. He answered my queries patiently, some of which I guess were annoying.

Dhanush then made me fill up a questionnaire. There were questions on body mass index, neck circumference, usual sleep habits, sleep complaints, daytime sleepiness, etc. The questionnaire also looks at one’s medical history.

Part two of the questionnaire deals with causes of sleep loss. I ticked two of the 17 statements―‘my sleep routine differs each day’ and ‘I drink coffee in the evening’. The other causes of sleep disorders listed in the segment included changing shifts at work, sleeping with lights on or in a noisy environment, and a bed partner who disrupts sleep. (My partner sleeps soundly, making me envious every single night!) Then there are questions that look at the subject’s state of mind.

Dhanush allowed me to freshen up and unwind for a while. He told me not to use gadgets while I prepared to sleep.

The lab was clean and quiet. I lay down on the bed. Dhanush attached electrodes to my head, chin, hands and legs. Some were to be attached on my chest and ribs. He told me I could take help from a female technician if I wanted. I preferred to connect them on my own. He came back after a few minutes, and I was all set for a good night’s sleep.

It took me a long time to fall asleep. I kept tossing and turning. I remembered having read somewhere that the time one takes to get to sleep is known as sleep latency.

I missed my phone badly. Somewhere in the middle of the night, I fall asleep. A few minutes or hours later, I shook my legs violently. Dhanush, who was monitoring the screen in the other room, came in and asked me whether I was okay.

I was tired when I woke up.

At 10:30am, I got my sleep report. My sleep efficiency (the ratio of total sleep time to time in bed) of 52 per cent was interpreted as poor. “A sleep efficiency rating of 80 per cent or above is considered normal,” said Dr Narendra U., consultant at Apollo Hospitals, Bannerghatta.

Insomnia is when the individual is unable to initiate as well as maintain sleep, said Dr Sumant Mantri, senior consultant at Apollo Hospitals. Anxiety is the most common cause of insomnia, he added. I told him that I find it hard to get to sleep even on days when I am happy. He said there could be something at the back of my mind. “Depression, diabetes, cardiac and respiratory diseases also can contribute to insomnia,” he said.

Individuals who do not get enough sleep should get a proper evaluation done, said Mantri. They should also practise sleep hygiene―a set of sleep rituals or healthy habits that help one get a good night’s sleep. “Keep your bedroom quiet, dark and comfortable. Do not use the space for eating. Make it a point not to work from bed,” said Mantri.

Ditch your gadgets at least one and a half hours before bed. “LED and LCD screens emit blue light, which decrease the melatonin secretion in the system. That could keep you awake at night. Melatonin is the sleep-inducing hormone. Deficiency in melatonin can lead to insomnia,” said Mantri. Treatment for insomnia includes melatonin supplementation.

Not getting enough exposure to sunlight can disrupt your circadian rhythm, leading to sleep problems. Insomnia caused by circadian rhythm disorders are common among those who work the night shift, explained Mantri. “As long as a person does not have daytime sleepiness, there is no cause for concern,” he said.

Sleep study is useful for people with sleep disorders like obstructive sleep apnoea, insomnia, and restless leg syndrome. It helps assess leg movements, oxygen saturation levels, etc.

There are four types of sleep study. Level 4 detects oxygen level. Level 3 is used for detecting apnoeas. Level 1 and 2 are almost similar―the former is conducted in a sleep lab, and the latter is done in a home-based setting. They usually include video recordings as well. Level 1 helps detect and quantify obstructive sleep apnoea, restless leg syndrome, seizure-like episodes and insomnia.

I underwent a Level 1 study, which uses ECG and EEG recordings. Chest belts are used to see chest expansion during apnoeas. Air flow from the nose is also assessed, and drop in oxygen during apnoeas are detected using the pulse oxymeter.

The Level 1 study costs Rs14,000.

sleep-disorders-problems-causes-solutions

Fri Nov 25 19:39:21 IST 2022

Sleep is a fascinating biological process.

“Birds can sleep while flying. Seals can use different sleep biology while swimming in the sea and when on land,” says Dr Sanjeev Jain, former senior professor, department of psychiatry, Molecular Genetics Laboratory, and dean, behavioural sciences, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru.

Sleep is an efficient way to 'service' the brain, to make sure it works well and long enough, says Jain. “All through life, sleep is essential to provide the brain time to rest and recuperate, and to get rid of the residue of information processing that uses up a lot of metabolic energy,” explains Jain. “So like any other organ, these waste products have to be removed, the electrical circuits have to be serviced and checked, and new learning has to be stored efficiently. As the master controller, it also has to organise rest for the rest of the body.”

Sleep deprivation can wreak havoc on our body and brain. One should get seven to nine hours of uninterrupted sleep each night. “If you don’t get enough sleep for various reasons, it could increase your risk of cardiac arrest or a premature heart attack,” warns Dr Subhash Chandra, chairman and head of cardiology, BLK-Max Super Speciality Hospital, New Delhi.

Sleep deprivation is a silent epidemic. Light pollution― excessive exposure to light and using light-emitting devices like smartphones and laptops for long hours―jeopardises our sleep patterns. “Many issues such as depression, attention-deficit disorder and chronic anxiety may be linked to light pollution,” says Jain.

The increase in the prevalence of sleep disorders among young adults is a matter of concern. Dr Shama Kovale, consultant ENT, Kokilaben Dhirubhai Ambani hospital, Mumbai, attributes it to lifestyle choices. “Incidence of sleep apnoea has increased in young adults because of obesity, again related to sedentary lifestyle, though it can also occur in non-obese patients,” she says. “There are other sleep disorders like insomnia that happen due to increase in screen time, reduced physical activity and stress.”

Sleep architecture is a cyclical pattern and is divided into two parts―REM (rapid eye movement) and non-REM―explains Dr P.S. Biswas, consultant psychiatrist, Manipal Hospital, Salt Lake, Kolkata. Sleepwalking, a type of sleep disorder, is witnessed in the deepest stage of sleep or non-REM. It is mostly seen among children and young adults. “The main cause of sleepwalking is sleep deprivation, frequent changes in sleep timings, jet lag and genetic factors,” says Biswas. “People suffering from obstructive sleep apnoea can also experience sleepwalking episodes. Sleep talking (somniloquy) is caused by emotional stress and is mostly seen among children aged between three and 10.”

Some genetic defects can cause severe sleep disorders, which can even be fatal, says Jain.

Here are six common sleep disorders:

OBSTRUCTIVE SLEEP APNOEA

The daily commute from Noida to Gurugram turned a nightmare for Sukhwinder S. Manchanda, as he developed sleep problems. The 53-year-old who works for Kirei, a garment exporting company, would feel sleepy driving to work. “There were times when I had to stop my car on the side of the road, take a nap and continue,” recalls Manchanda, who is moderately obese. Manchanda would snore loudly waking his wife up at night. He also started losing sleep over not being productive during the day and he decided to consult Dr Vivek Nangia, principal director and head-pulmonology, Max Super Speciality Hospital, Saket, in 2019. Based on his symptoms and an overnight sleep study, Manchanda was diagnosed with severe obstructive sleep apnoea (OSA). “Snoring, if associated with obstruction to airflow, can prove to be fatal,” warns Nangia. A patient with OSA experiences cessation or reduction of airflow into the lungs during sleep owing to obstruction in the upper airways. When the patient snores, there is some flow of air happening. But snoring is often followed by a complete cessation of air leading to a drop in oxygen levels, says Nangia. “This happens multiple times in the night resulting in [a delay in the oxygen] reaching the various organs of the body including brain, heart, kidneys,” he says. “It can have a plethora of implications on the human body.” The obstruction to the airflow could be due to various causes, including laxity of the muscles at the back of the throat, which become sloppy and collapse inwards to block the passage of air during sleep, he adds. “Other causes could be anatomic variations like bulky tongue, enlarged nostrils or uvula, and a lower jaw pushed backwards.’’ OSA is more common in men than in women. Women during pregnancy and after menopause are at a higher risk of OSA. Increasing age, obesity, particularly upper body adiposity, diabetes, alcohol or sedative use and smoking are also predisposing factors for OSA. Loud, habitual snoring and noisy breathing in all sleeping positions are the most common symptoms of OSA, says Nangia. “It is usually associated with fragmented sleep, frequent awakening at night, urge to pass urine during the night, choking sensation during sleep, tossing and turning in bed, jerky leg movements, morning headache and dozing off during the day at the slightest opportunity,” he says. “OSA is a significant contributor to road accidents as well.” The impact of OSA is not just limited to disturbed sleep―it could lead to hypertension, cardiac issues, treatment-resistant depression, dementia and more. “Such patients are more likely to have complications after major surgery as they are prone to breathing problems, especially when sedated and lying on their back,” says Nangia. OSA could manifest in children with non-specific symptoms like poor learning, attention deficit or hyperactivity disorder and complications like neurocognitive impairment and behavioural problems. The gold standard treatment for OSA is continuous positive airway pressure therapy. Manchanda has been using a CPAP machine ever since he was diagnosed with OSA. “Now I get eight hours of uninterrupted sleep,” he says, “and I wake up more refreshed.”

CIRCADIAN RHYTHM DISORDER

Mahesh K.C., an IT professional from Bengaluru, works different shifts through the week and frequently travels abroad. He drinks and smokes occasionally. The 36-year-old would often complain of sleeplessness, oversleeping and fatigue. He was diagnosed with Circadian Rhythm Disorder (shift work disorder and jet lag), after taking his medical background and physical assessment into account.Circadian Rhythm Disorder includes either trouble falling asleep, waking up in the middle of the night, or getting up too early and having trouble going back to sleep. Mahesh required counselling, lifestyle modification and proper drug initiation to get his life back on track. Jet lag can strike you when you travel across different time zones. “Daytime sleepiness, sleeplessness at night, headache, appetite loss, digestive problems, restlessness or moderate depression are all indications of jet lag,” says Dr Sudharshan K.S., consultant pulmonologist at Fortis Hospital, Bengaluru. Changing time zones could disrupt your sleep, leading to circadian rhythm disruptions. Circadian rhythm disorders are caused by the body’s internal clock differing from the time in the new time zone. “Depending on how quickly our internal biological clock adjusts to new external changes, jet lag is typically just temporary,” says Sudharshan.

Shift work can also disrupt your circadian rhythm. People who work on night shifts on a regular basis or switch between shifts can have long-term disturbances that could impact their social and physical well-being. People who regularly work the night shift must get used to napping during the day and being awake and aware at night, suggests Sudharshan.

RESTLESS LEG SYNDROME

When sleep eludes him, Dr Bhupesh whiles away the hours imagining stories or watching YouTube. Sometimes, the critical care specialist from Pauri Garhwal reads books to fall asleep. But nothing seems to work. The 47-year-old suffers from Restless Leg Syndrome (RLS), also known as Willis-Ekbom disease. “RLS is a common sensorimotor neurological disorder characterised by an urge to move the legs due to unpleasant sensations,” explains Dr Sanjay Pandey, head of neurology, Amrita Hospital, Faridabad. The symptoms are usually worse in the evening. “It takes me around an hour or even longer to fall asleep,” says Bhupesh. He cannot sleep through the night because of the urge to move his legs and hardly wakes up refreshed. There are times when he has had to request for an exchange of duty.

Due to missing and interrupted sleep, he had severe headaches a few years ago and was put on prophylactic treatment. Prophylactic drugs can be nauseating. “I’d still take it because missing a single dose meant missing a night’s sleep,” he says. RLS progresses slowly. “Initially, only my lower limbs were involved,” says Bhupesh. “Later on, I had unpleasant sensations in my upper limbs as well.” RLS is twice as prevalent in women than in men. In more than 50 per cent patients, positive family history is reported. “The strong familial component has led to decades of genetic research in RLS and now it is considered a complex genetic disease,” says Pandey. Bhupesh’s mother and a maternal uncle, too, had RLS.

In 85 per cent of patients, sleep disturbances with periodic limb movement (PLM) are reported. The reported prevalence of RLS during pregnancy ranged from 11.3 per cent to 19 per cent and is reported to be highest in the third trimester. “Also, in many studies, the prevalence of RLS is reported to be strongly associated with the number of children that a woman had given birth to,” says Pandey. “These studies should be replicated in India, considering the high birth rate in many parts of the country.”

Some of the risk factors for RLS include Parkinson’s disease, peripheral neuropathy, cardiovascular disease, diabetes, arterial hypertension and depression. Lower levels of serotonin, a neurotransmitter, can also cause RLS. Also, in some conditions such as iron deficiency anaemia, renal insufficiency and pregnancy, RLS can severely affect both the health condition and quality of life, says Pandey. “The role of iron therapy in the management of RLS is interesting and important in the Indian context, where iron deficiency anaemia is more prevalent, especially in pregnant women,” he says. “In the long term, most patients report inadequate treatment response.” The diagnosis of RLS remains clinical only. In patients presenting with symptoms of PLM, polysomnography (sleep study) may be required. “Formerly, the dopaminergic treatment was considered to be the first line. However, recent studies have shown that they are associated with a serious worsening of symptoms known as augmentation,” says Pandey. Drugs like pregabalin, gabapentin, opioids have provided better treatment options. Yoga helps relieve RLS symptoms, says Bhupesh. “Since I started doing yoga, my sleep quality has improved a lot,” he says, “and dystonia (a movement disorder causing the muscles to contract involuntarily) has gone completely.”

NIGHTMARES

Hamlet was haunted by “bad dreams”. So was Jay, a 17-year-old university student. His dreams were vivid. They were mostly about being stared at by a dead dog and a man dying of starvation. “The dog had monstrous and gothic features,” he recalls. Jay would dread going to bed, and would stay up as long as he could.

As sleep deprivation started taking a toll on his health, Jay sought help. Psychological testing revealed that while taking the train to college, Jay had seen the dead body of a starved man at a railway station. “When he reached college, he again encountered the dead body of a dog who had died due to an infection. Since that day, he started having nightmares,” says Dr Manish Kumar Verma, professor of psychology, School of Humanities, Lovely Professional University, Punjab.

Systematic desensitisation and thought restructuring helped Jay get rid of his nightmares. “The main object of fear was identified as the death of the dog,” says Verma. “A hierarchy of fear was constructed using SUDS (Subjective Units of Distress Scale).” Jay was then taught box breathing, a deep breathing technique wherein you breathe in for four seconds, hold, breathe out and then hold for the same number of counts. He was also taught to redefine his thoughts for the dog and transform his feelings of guilt and fear into sympathy.

In our everyday life, we come across various scenarios that have an impact on our well-being. “Emotionally sensitive individuals are hit harder than their counterparts,” says Verma. “Especially individuals who lack immediate family and peer support after a traumatising incident.” The fear of being ridiculed or labelled as vulnerable often prevents them from sharing their concerns with others. “Letting your emotions out and sharing your concerns with your loved ones are very essential for maintaining mental health and well-being,” says Verma.

HYPERSOMNIA

Danielle Klaus Hulshizer, a grade 1 teacher from Alpharetta, Georgia, does not hear the alarm ring in the morning. Her husband, Scot, has to force her out of the bed. Danielle, 43, suffers from hypersomnia. Sleep is not restorative for people with this condition. “They could sleep for two days straight and still be just as tired the following day,” says Scot, who has worked with the Hypersomnia Foundation in the US. Hypersomnia often manifests as inability to stay awake and consequently doze off in the middle of situations when one should be awake, such as at work, while driving, and in social circumstances, says Dr Lancelot Mark Pinto, consultant pulmonologist and epidemiologist, P.D. Hinduja Hospital and MRC, Mumbai. “We usually diagnose this as a medical condition if it persists for more than three months,” he says. It is important to ensure that the excessive daytime sleepiness is not merely a reflection of poor sleep at night, which is a common cause.

One of the major elements of hypersomnia is brain fog. “Stimulants can keep you awake, but the cognitive issues remain unsolved,” says Scot. “For instance, being unable to find the right word or slower processing of information. Brain fog is similar to coming out from under general anaesthesia. It is virtually identical to the cognitive symptoms of ‘long Covid’. Individuals with hypersomnia have always suffered with this to varying degrees.” Most trials on patients with hypersomnia, he adds, have focused on tackling cognitive issues. Certain disorders causing hypersomnolence such as narcolepsy, Klein Levin syndrome and idiopathic hypersomnolence have a genetic component, says Pinto. Hypersomnia caused by genetic conditions is often treated with a combination of rigorous sleep hygiene and stimulant medications during the day. Scheduled naps during the day have also shown to help such individuals. Epworth sleepiness scale, a questionnaire easily available online, is a useful tool for those suffering from excessive daytime sleepiness. Pinto says ensuring good sleep hygiene is the first step toward knowing the cause of the hypersomnolence. A good sleep hygiene includes sleeping at the same time everyday for at least eight hours, avoiding caffeine/nicotine intake and avoiding bright lights or devices at night. Also, one should rule out psychiatric and medical conditions or medications. Danielle has tried a number of monitoring devices like wearables and an Apple Watch. She is grateful to have had the opportunity to have been part of several experimental treatments. But looking back, she says they tend to wane in efficacy over the years. She, however, hopes that some day she will be able to lead a normal life.

INSOMNIA

Sudha, 58, from Mysuru would get anxious when sleep eluded her. “I used to have severe headaches hampering my productivity,” she recalls. She complained of both sleep onset and sleep maintenance for years and was on several sleeping pills. Despite taking the pills, she would barely get six hours of sleep. “And that too was not restful. I wish no one had to face this trauma,” she says.With every passing night, she got anxiety on whether she would get sleep or not. The anxiety was a perpetuating factor for her insomnia, and it further led to depression.

Sudha saw quite a few doctors who prescribed sedatives. When those didn’t work, she visited Dr Satyanarayana Mysore, head of pulmonology, Manipal Hospital, Bengaluru. “We went through insomnia 3P protocol. There are sleep questionnaires available but are rarely used in India. Some of them are quite helpful in looking at predisposing, precipitating and perpetuating factors and other risk factors for insomnia,” says Mysore. After a detailed evaluation, Sudha underwent a sleep study. “In this particular sleep study, we looked at the amount of dream sleep vs non dream sleep,” says Mysore. “All the three stages of non-dream sleep were looked into, [as were] any factors that increased the arousal response in the brain cortex and whether there was any restless leg syndrome, fragmentation of sleep and effect of medications.” The sleep study is performed in conjunction with the clinical profile of the patient and also the psychological history that would have been elicited. Sudha’s sleeping pills were tapered down. “Non-pharmacological steps that are very crucial including sleep restriction therapy, management of insomniac spells at night, sleep hygiene measures and avoiding daytime sleepiness were all discussed,” recalls Mysore. Advances in management of insomnia offer much hope for people with insomnia. “Now there is a standardised approach which was not there in the past,” says Mysore. “Sleep psychologists can help those with insomnia. Questionnaires are good enough to reveal perpetuating or precipitating factors. Polysomnography is now getting refined. Medications, cognitive behavioural therapy, stimulus control strategy, desensitisation therapies and behavioural modification programmes are also offered to patients with insomnia.”Before prescribing medicines, a proper evaluation needs to be done, says Mysore. “It will reveal whether the patient needs lifestyle changes and dietary and weight loss strategies,” he says.

cast-away

Fri Oct 28 17:54:48 IST 2022

VOICES IN MY HEAD

“Madam, are you Priyanka Gandhi?” asks Selvi, a paranoid schizophrenic at Udhavum Ullangal, a home for the homeless mentally ill in Tirupattur, Tamil Nadu. The question would have been comical, except that I have realised that in the world of the insane, everything is serious business. That is why Selvi believes that Sonia and Rahul Gandhi talk with her, and that superstar Rajinikanth is going to stop the voices in her head.

“Someone has changed my mind,” she says, “I want to know why they changed my mind.” Her expression is one of intense concentration, as though she is painstakingly trying to catch up with her thoughts.

There are 137 rescued people at the Tirupattur home, run by C. Ramesh and his wife, Prema. Each of them has their own stories. There is Suresh Singh who has been in the home since 2014. He was found on the street in a dishevelled state, muttering to himself and feeding on garbage. He was carrying a flag and thought he was a soldier. Although the home traced his family, they refused to take him back. “I do patrol work for the railway CBI,” he tells me with conviction.

Then there is another Selvi and her nine-year-old daughter, Dhanushree. Selvi was found around 30 weeks pregnant on the streets of Vaniyambedi 10 years ago. She was diagnosed with formal thought disorder and psychosis. She does not remember her life before she ended up on the street, except for a vague memory of a chicken shed near her mother’s home. Now, her daughter is everything to her. When asked what she wants Dhanushree to become when she grows up, Selvi says: “I only want her to be with me as long as I live.” Dhanushree lives in the women’s home and studies in a convent school nearby. Her favourite pastime is playing kannambochi (hide and seek) with Krishnaveni, one of the residents.

“We started the home in 2006,” says Ramesh. “I figured that there were homes for leprosy-afflicted, the elderly, orphans…. But there were no homes for the homeless mentally ill.”

According to him, the main problem they face is overcrowding. For many years now, they have been turning down requests for admission. Udhavum Ullangal also has to accommodate patients referred by the district mental health department in Ranipet, when the Emergency Care and Recovery Centre (ECRC) run by the department runs out of beds.

Everyone at Udhavum Ullangal has their own demons to fight―of being under the constant government surveillance; of being followed by ‘enemies’; of celebrities wanting to marry them; of having divine powers; of being chosen to ‘protect the border’…. But in another way, their lives have followed similar trajectories. Abandoned by families, lured by the pull of the ‘voices’, left destitute on the streets, rescued by the police or an NGO…. Seen like that, mental illness is an equaliser―it channels its victims’ lives in one direction. It consumes their identity so completely that it is difficult to believe they were once someone’s mother, daughter, son or husband.

THE STREET FIGHTER

A lone, dishevelled woman carrying a four-year-old child wanders around the town of Vellore. It is raining heavily and her sari is drenched, strands of her hair plastered to her face. The child cries relentlessly, but she pays no heed. She wanders mindlessly, aimlessly, perhaps driven by a primeval instinct deep within. A few days later, the child is diagnosed with dengue fever and dies at the government hospital. Her family is inconsolable. The woman, however, does not stay home. Nothing can keep her from the streets. She wanders and wanders….

This is the story of Chinnapulla, who lives in the slums of Vellore’s Old Town, where we go to meet her. The highlight of the slum dwellers’ lives is the two hours daily when they get water. Women make their way to the water pumps holding colourful plastic pots or squat by the roadside washing clothes.

In Chinnapulla’s home, collecting water is her responsibility. She lives with her husband and four daughters in a cramped, one-room tenement roofed with tarpaulin sheets. She wears a bright yellow sari that contrasts with her matted and lifeless hair. “I only took my daughter out because it was raining and our roof was leaking. It was not safe for her to stay inside,” says Chinnapulla, although her husband, Karuna, maintains that the child got sick because she kept taking her out in the cold and the rain.

“Chinnapulla used to be like a rabid dog, often violent, always fighting with us,” says Karuna. “She would never stay home. She would sit by a nearby water tank from morning till night. Initially, we thought she was possessed. We took her to a faith healer who lives near her mother’s home, in the interiors of Tamil Nadu. We thought the rituals would free her, but nothing worked.”

That’s when Karuna approached Christian Medical College and she was admitted in its mental ward. Thrice, she tried to escape by jumping over the wall. Then, the CMC team decided that community-based treatment would be best for her. She was brought back home and prescribed anti-psychotics. Since then, she has shown considerable improvement.

Compared to the other homeless mentally ill people of the country, Chinnapulla is fortunate. At least she has a place to call home and a family who is willing to accept her. Homeless mentally ill people constitute the most vulnerable and marginalised section of society. “Facilities for the rehabilitation of the homeless mentally ill were generally non-existent in many states, and wherever available, were reported to be provided by NGOs often located in bigger cities,” states the National Mental Health Survey 2015-2016. “However, the number of homeless mentally ill being able to access care in these NGOs was reported to be limited. Apart from NGOs, mental hospitals and beggars' homes were the other options available for the rehabilitation of the homeless mentally ill.”

According to Dr Anna Tharyan, former head of department of psychiatry at CMC, there is a dearth of information about homeless people with psychiatric illness. She treated Chinnapulla and cites many factors that result in homelessness among such people.

“Lack of insight, which is an integral part of chronic severe psychiatric conditions, predicts that the sufferer will not seek treatment. Financial constraints and stigma limit the family’s ability to ensure regular consultations and administration of medicines. Paucity of affordable psychiatric services contributes to progressive deterioration of functioning. Planning and policy is impeded by the lack of documentation of the scale, causes and nature of the problem of homelessness. This population will not be captured in a census or survey because of the migratory nature of their lives. Working with the homeless psychiatrically unwell presents multiple challenges. Laws which are meant to protect the rights of people with major psychiatric disorders, can complicate rescue, treatment and rehabilitation. Services for the treatment and care of the homeless mentally ill are grossly inadequate. Chronic psychoses can result in significant levels of dependency. It requires deep understanding and empathy, to say nothing of financial backing and administrative skills, to support people whose brains have been ravaged by disease and neglect.”

For Chinnapulla, the help she received from community workers and the CMC team might have helped keep her mental illness in check, but when it comes to her quality of life, there is much to be desired. The family lives in a fly-infested hut and struggles to make ends meet. Karuna used to roll beedis earlier, but now works in a lodge where he earns 0150 per day. With the money she gets from begging, Chinnapulla meets her own expenses, but does not contribute to household expenses.

“No matter how well mental health services are provided, alone they are insufficient to support the needs of all people, particularly those who are living in poverty, or those without housing, education or a means to generate an income,” states a WHO report on supported living services for mental health. “For this reason, it is essential to ensure that mental health services and social sector services engage and collaborate in a very practical and meaningful way to provide holistic support.”

Mrinalini Ravi, who works with the Banyan, an NGO for the homeless mentally ill headquartered in Chennai, agrees. “The government still has an old-fashioned outlook on mental health that revolves around providing medical support and treatment. But there are so many other issues when it comes to mental health, concerning social mental health, civil society participation, the poverty factor, inclusion issues…. For example, even those who are well enough to work are not able to do so because people are unwilling to employ a ‘mentally unsound’ person.” Ravi says that although many states have provisions for a disability allowance, not many mentally ill patients avail of it, either because they don’t look disabled or because they are too ill to admit that they need help.

TAKE ME HOME

“The eight years I spent at the Kuthiravattom Mental Hospital in Kozhikode were the worst years of my life,” says Jameela, a demure woman whose smile brightens the room. “They never allowed you to take proper bath. They would spray you with a hose. You might or might not get soap. You could never step outside the hospital. If you got violent, they would drag you to the cell, where you were locked up like a prisoner.”

Jameela’s husband used to abuse her. Because of the pain and stress, her thinking became erratic. She left home and tried to kill herself by jumping on the railway track before an approaching train. The police rescued her and brought her to Kuthiravattom. Her daughter, Serena, used to come and visit her at the mental hospital, but she asked her to stop coming because it was too painful to see her. Now, she does not know where her daughter is, whether she is married or has children of her own. “I often wonder what Serena is up to,” says Jameela. “Sometimes I dream of buying a house and staying there with my daughter.”

For the past five years, Jameela has been living with a few other recovered mentally ill women at a home rented by the Banyan Kerala as part of its Home Again initiative. Today, she earns Rs6,000 per month for taking care of an elderly woman at a nearby house. She has saved over Rs1 lakh with which she wants to go on the hajj.

Home Again provides housing and supportive services for people with mental health conditions who have been in long-term institutional care. They either do not want to go home, are unable to trace their families or have been rejected by the families. The service was created in 2015 by the Banyan, and has now served over a million people, with operations in Tamil Nadu, Kerala and Maharashtra. It is the only mental health model from India that has been recognised by the WHO. Under the Home Again initiative, a family or home-like environment is created to enable the residents to mix socially and form connections.

“Even after recovering, people are languishing in mental hospitals for years,” says Salih P.M., who founded the Kerala chapter of the Banyan in 2017. “In 2018, the Banyan officially entered into an MoU with the Department of Health and Family Welfare in Kerala. This allows us to place social workers at the three mental hospitals of Kerala. Through these workers, we help individuals who are fit enough to exit the hospital to join the Home Again programme.”

According to him, the need of the hour in mental health is deinstitutionalising. “None of the government mental hospitals helps the individual reintegrate with her family. If it is a man, the hospital will pay the bus or train fare if he is able to provide his home address. But if it is a woman, they won’t even do that. Women continue to languish in mental hospitals until a family member or a registered NGO rescues them. Even after recovery, people are stuck inside hospitals for 10, 20 or 30 years. As a country, we don’t believe in deinstitutionalising because the existing mental health institutions remain as they are. In order to make the beds free, they sometimes move you from government mental hospitals to private institutions. But this does not make any difference, because the patients are simply moving from one institution to another.”

The impact of long stay on patients in mental hospitals is devastating. Shehnaz, one of the mental health coordinators at the Banyan, recounts how she travelled to Baleswaram in Odisha to reintegrate a mentally ill woman, who had been living in a government mental hospital for 14 years, with her family. They traced her family through the local police station. Twenty-eight years ago, she had married a lower caste man against her family’s wishes. She developed post-partum mental health issues. “I don’t know what happened to her for 14 years before she was brought to the hospital,” says Shehnaz. “Perhaps she was trafficked or abused. When we contacted the village head, he refused to come and pick her up. So, the lady, a volunteer and I called her son from the Baleswaram station. The son, who had been a little over a year old when she last saw him, did not pick up the phone. We did not know what to do. The station master announced our arrival thrice. Finally, a tall lanky lad came forward. The one-year-old boy had turned into a 29-year-old man. The reunion between mother and son was cinematic. They stared at each other, before tears welled up in their eyes. The son now had a son who was his age when his mother had left him.”

Then Shehnaz makes a profound remark: “If only there had been a coordinator then who helped address her mental health needs, she would not have lost 28 years of her life.”

deepika-padukone-mental-health-foundation-live-love-laugh

Sun Oct 30 13:53:14 IST 2022

On a warm October afternoon in Chinna Ikkam village of Tiruvallur district, about 80km from Chennai, six women in pink saris are seated on plastic chairs in a semicircle. They are all facing Bollywood superstar Deepika Padukone. The women, all Accredited Social Health Activists (ASHA), discuss in detail the numerous mental health issues prevalent in their communities―postpartum depression among new mothers, suicidal tendencies and stigma-induced trauma amid people with disabilities, and more. The actor, plainly dressed in a beige salwar suit, with her hair pulled back, listens to each one intently.

For instance, an 18-year-old underwent acute pain while delivering a baby and became averse to the very idea of motherhood. She refused to nurse her baby and contemplated suicide. In another village, a woman in her early 20s was sent back to her maiden home within a month of marriage because of her obsession with washing hands. It drove her to depression. E. Sangeetha, a village health nurse from the Primary Health Centre of Kalyanakuppam, mentioned “the failure of love marriages, unwanted pregnancies, difficulties associated with early menstruation”as the most-observed issues plaguing women in her area. After the initial inhibition of opening up to a celebrity, the women spoke with animated enthusiasm. They spoke in Tamil, a language we were told that Deepika was not fluent in. But she never showed it. She would give everyone a patient hearing and would keep nodding her head to denote comprehension. For, Deepika, from her own battle with depression eight years ago, has learnt that listening is the first step towards empathy and it transcends the language barrier.

That learning, however, did not come easy. There was a time when she had found herself sinking into a black hole of negativity, worthlessness and self-destruction. A gnawing feeling that felt so beyond control that it drove her to “suicidal thoughts”, making her question her very existence. All she wanted then was someone who could listen to her, without judgement. That is why, when E. Nandini (name changed) spoke about how her hallucinations had made it difficult for her to lead a normal life, Deepika did not try to console her. She simply listened. Towards the end, a teary-eyed Nandini, 38, said, “Thank you for hearing me out. I feel lighter and better.”Deepika smiled and replied, “I know the feeling.”

Deepika, straddling two very different worlds quite gracefully, was in Paris for a fashion event just before coming down to Chinna Ikkam, where she launched a rural mental health initiative via LLL (Live Love Laugh). She launched LLL in 2015, a year after getting diagnosed with depression. The aim was to give hope to every person experiencing stress, anxiety and depression. This, the foundation does by funding grassroot organisations and collaborating with them so as to take the discourse on mental health forward. Flanked by her mother, Ujjala, and counsellor Anna Chandy on one side and sister Anisha and friend and foundation trustee Ananth Narayanan on the other, Deepika takes centrestage as she interacts with activists, health workers, caregivers and the media.

In Chinna Ikkam, LLL has partnered with Vasantham Federation of Differently Abled Persons, which helps the needy get free access to mental health services. When Nandini was abandoned by her family because of her mental illness, Vasantham helped her get a unique disability identity card to avail of the benefits provided by the Tamil Nadu government. “Through this card, I receive a monthly allowance of Rs1,000 for my psychiatric medicines,”she said. “It’s not a huge amount, but we make do.”

The grassroots organisations that LLL works with first identify people with mental ailments, with help from ASHA and Integrated Child Development Services. LLL then provides funds for capacity-building and implementation so that preliminary medical attention is provided for free.

Deepika’s own step towards seeking help came from her mother who “realised something was deeply wrong”. Ujjala recalled how the “exact same thing” had happened to Deepika's father, Prakash, years ago. At the time, the badminton player was at the peak of his career, having won championships in India and abroad. Deepika, too, was at the peak of her career when she felt “miserable and empty”. A year before her breakdown, she had delivered award-winning performances. That’s when her mother saw a pattern and joined the dots. “I was shocked,”she said. “Memories from the past came haunting back and I knew something was seriously wrong. Deepika needed professional help.”

At the time, Deepika was in Mumbai and her family had come down to visit her. Ujjala cancelled her return ticket to Bengaluru to be with her elder daughter then. And, she has stayed by her side ever since. Ujjala comes across as restrained, quiet, camera-shy and highly guarded of what she says. In terms of temperament, Anisha seems more like her mother. But Deepika, says Ujjala, was always the complete opposite. “She is temperamentally outgoing, outspoken, bubbly and cheerful,”she told THE WEEK, sitting in the car even as her daughters continue with their work amid rains. That is why it was “shocking”to see her in a highly vulnerable state. Ujjala made it a point to ask Deepika multiple times what was wrong. That also laid the path for determining LLL’s first campaign―'Dobaara Poocho' (Ask again). “Initially, I thought it could be related to stress at work or a past experience or some chemical imbalance in the brain,”said Ujjala. “But then I realised that it could happen to anybody and need not actually answer the question ‘why’.” It was then that she asked Deepika to see Anna Chandy, a counsellor and family friend, who, in turn, referred her to psychiatrist Dr Shyam Bhat.

“It is important to remember that mental illness is not because of one single factor but [many],” said Chandy. “So, at any given point, there may or may not be a direct correlation to an event that just happened; it might just be a contributing factor but not the only factor. In the case of Deepika, I knew that she was inherently a happy person and very resilient.”

Deepika took the first step to seek help, but did not stop there. She spoke about her mental illness in a television interview―something an Indian actor of her stature would rarely do. That she had lost a dear friend to depression had further added to her resolve to help others who found themselves in a similar position as her but had no way of accessing help. That is how LLL was born. Earlier, the goal was to save and impact “even one life if possible”, but it has now expanded to “touching as many lives as possible”.

“That one interview got us such tremendous feedback that we were overwhelmed,” recalled Anisha, who became Deepika’s primary caregiver early on. “People from all over the country messaged saying that her experience resonated with them in so many ways. That it gave them a voice to express their own innermost fears. That's when we thought we could not stop at the interview and had to go beyond.”

At a time when her own career as a professional golfer was going good, Anisha decided to give that up and commit herself to the cause of mental health. With a graduate degree in psychology, sociology and economics, she became the CEO of LLL. Anisha's relationship with her sister, she said, became much more evolved post the latter's diagnosis.

“Initially, I thought I was someone who was fairly well-versed with the topic of mental health. But the experience of being a caregiver taught me so much more,” said Anisha. “It was overwhelming. How can one help, but not overdo it? How does one advise without sounding preachy? Just how does one extend care to a loved one without letting it take a mental toll on oneself?” Her experience led to the introduction of the caregiver module in LLL’s mental health initiative. In Tiruvallur, Vasantham has tied up with Carers Worldwide, which focuses on caregivers. They plan to scale up their caregiver support group from 12 to 50.

For LLL, Tiruvallur became significant for a number of reasons. First and the most significant of all was that LLL found a donor in Sundram Finance, which was keen that the work happen in Tamil Nadu. Second, Vasantham, which was shortlisted as the implementation partner, was based in Tiruvallur, a district with “the highest number of people with disabilities in Tamil Nadu”. “There are more than 96,000 people with disabilities here, including those with any type of mental illness," said Anil Patil, founder of Carers Worldwide. In terms of LLL’s impact in Thiruvallur since the initiative's launch in April 2022, there have been close to 500 direct beneficiaries and 480 caregivers, said A. Livingston, president of Vasantham.

Deepika’s next stop after Chinna Ikkam was the hamlet of Karikalavakkam. She visited the house of Amulu, a mother and caregiver to Surendran, 20. Three years ago, Surendran, who would have epileptic attacks in his teenage years, met with a road accident that left him with a head injury. He would turn violent, bite himself and often aimlessly wander through the village. He was diagnosed with multiple mental ailments, including psychosis. But the family of four was unable to afford any kind of treatment, as they make do with the meagre earnings of his rickshaw driver father. Vasantham helped the family get free access to medicines, enrolled Amulu into the village’s caregivers group and also got her the unique disability card.

When Deepika entered Amulu’s mudhouse at 2.30pm, she left her celebrity tag far behind. She sat on the floor, as she listened to Amulu’s travails. But the tag follows her around, like a shadow―villagers huddle around the SUVs and sedans blocking the narrow pathway to the house. Everyone wants a glimpse of the actor, a photo of or with her. Somebody asks out aloud if all’s well between Ranveer Singh, her husband, and her. The tag comes with a price.

But Deepika doesn’t let that get to her; she remains calm and composed. It has taken her a while to let her composure not be a mere façade. What Deepika wants to change essentially is the perception people have about mental illness. “What is most bothersome is this notion that if you’re successful you should be happy, implying that it would have been okay for me to say I was depressed had I been through a series of flops. Is that what the perception is? I want to tell everyone that it does not matter how successful you are or how much money you have or what stratum of society you come from,”she told THE WEEK while on our way to another caregiver’s house. Sitting next to her is Chandy, her constant companion whenever she talks about mental health.

When we reached the caregiver’s house in Arumbakkam, it was late evening but the weather was still warm. Devi, a 36-year-old divorcee, lives with her father and two brothers who have mental ailments. After marrying a man whom she courted for six years, Devi went into depression and also attempted suicide because of daily fights with her in-laws. LLL helped her get medical treatment after suffering for 11 years.

“Movies have a huge part to play in this (addressing stigma around mental health, especially depression),” said Deepika. “You know this typical thing of boy gets dumped by the girl and then starts drinking or vice versa, this typical portrayal of depression has played a huge part in stereotyping this mental illness.” Depression is not always about negativity alone. “With or without mental illness, I always had great resilience,” said Deepika. “In my case the two things are unrelated. There is no place for negativity in my life or being affected too much by things. How strong one mentally is has no connection with mental illness. I can be a really determined person but I can still get cancer, right? We have to start recognising this as a medical condition. I can go to the gym everyday but I can still fracture my hand. So I can be a mentally strong person but that does not mean that I'm not susceptible to mental illness.”

You could see how passionate she is about mental health awareness by the way she speaks―her expressions change by the second. Deepika was no longer just a celebrity but more a woman who was unafraid to bare her vulnerabilities. There was a look of resignation on her face when asked if she had ever tried to harm herself. She took a brief pause, looked into the distance and said that the question made her uncomfortable.

In the last six years, LLL has worked with communities across the country at multiple levels and in different formats. Foremost are its school programmes, called 'YANA - You Are Not Alone’, initiated in 2016 to create awareness on stress, anxiety and depression among adolescents, teachers and parents. Since the onset of the pandemic, YANA has been taken to over 2 lakh students and over 20,000 teachers in 31 cities across India. Through its rural programmes, presently concentrated in Deepika’s home state Karnataka, and Odisha and Tamil Nadu, free psychiatric treatment is provided to persons with mental illness. Across the three states, LLL has impacted 6,000 direct beneficiaries in the form of free treatment, and 25,000 indirect beneficiaries or caregivers across 20 talukas. Through its programme on doctors, LLL helps train primary care physicians to detect, diagnose and treat common mental disorders. This fills in a huge gap in a country of over 1.3 billion people with only about 8,000 psychiatrists. Besides, LLL offers research in mental health, counselling support to patients, and lecture series by noted experts on ideas that can shape the global mental health narrative. Its Frontline Assist offers free counselling service to India’s frontline workers. Its partner organisation in Karnataka is Association of People with Disability (APD) that works across Davangere, Gulbarga and Mysuru districts. In Odisha’s Lakshmipur and Narayanpatna, it is Carers Worldwide.

“In the next few years, we will scale up and work with various organisations and with the government to impact policy-making. We have predominantly been in the south and now we also want to cover the east,” says Anisha.

Deepika mentioned a startling statistic―one in seven Indians experience some form of mental disorder. “It is happening to so many of us but still the stigma is preventing many of us from talking about it,” she said. The situation has become even more worrisome because the National Mental Health Survey 2015-16 revealed that nearly 15 per cent of adults needed active intervention for one or more mental health issues and one in 20 Indians suffered from depression. As per the WHO, depression is ranked as the single largest contributor to global disability. And, at its worst, depression can lead to suicide; over eight lakh people die of suicide every year. It is the second leading cause of death in 15-29-year-olds.

Even as prevention programmes have been shown to reduce depression, Deepika maintained that one has to be cautious at all times. “Even today I remain on edge, thinking it can come back any time,”she said. “Every time I wake up, I make sure to prioritise my health, to know that I'm fine, so as not to sink back into that black hole.” For the longest time after she spoke about her mental health, Deepika felt a certain stereotype working against her. What was so depressing about her life, some asked. Was she simply calling for attention? “And, that is why, I know it can come back if I don't take care of myself,” she said. “You have to practise self care. I prioritised my sleep, took regular therapy, go into the sunlight and most importantly be mindful of where I am and what I am doing…. So not a single day goes by without me not thinking about my mental health, to keep checking in on how I'm feeling.... Now it has become a part of my everyday.”

a-doctor-demystifies-bipolar-disorder

Sun Sep 25 14:54:04 IST 2022

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.

These iconic words by Charles Dickens in A Tale of Two Cities summarise the state of mind of a person having a complex neuropsychiatric disorder called bipolar disorder.

Previously referred to as manic-depressive illness, the disorder is characterised by dramatic shifts in mood, energy and activity levels that affect a person’s ability to carry out day-to-day tasks. These shifts in mood and energy levels are more severe than the normal ups and downs experienced by everyone. Manic depressive illness was defined by Emil Kraepelin in 1898, and was characterised by recurrent mood episodes of any kind, either depression or mania. The current definition differs from the Kraepelinian one—bipolar disorder is said to have both depression and mania.

Bipolar disorder is frequently missed because of the nature of the disorder itself. More often than not, it starts with periods of depression, and sometimes a decade may elapse, until the person has a manic episode. Merely treating depression in such persons will not result in the relief of symptoms. This is why psychiatrists keep an eye out on uncovering underlying bipolar tendency in persons (a) who present with early-onset (20-25 years) of multiple periods of depression (b) who have a family history of bipolar disorder (c) who have been diagnosed with ADHD (d) who engage in substance misuse (d) in whom the onset and offset of depression is abrupt (e) whose depression refuses to get better despite treatment (f) whose depression worsens with antidepressants.

Natasha (name changed) had hard-to-treat depression. She had consulted a host of doctors and mental health professionals. Her depression refused to abate despite years of treatment. I vividly remember her exasperation at not being able to find a solution to her vexing medical problem. During the clinical interview, upon careful probing of her symptoms, her mother confirmed that Natasha had periods of mildly elevated mood wherein she was found to be more excitable, happier than usual and as though filled with more energy. These symptoms were never severe enough to disrupt her professional, personal or social spheres. Over the course of her illness of 15 years, she had four such distinct periods. Unfortunately, these were hard to pick during the initial clinical interviews. Hers was a case of bipolar II disorder, which is characterised by depression and hypomania. Bipolar II disorder is generally hard to pick during a single clinical interview, and requires clinical probing of symptoms, in the presence of a good informant. Missing periods of hypomania in the person’s history completely changes the management of the disorder, and has therapeutic implications.

Prevalence

Studies have reported that the lifetime prevalence of bipolar disorder I varied from 0.3 per cent to 1.5 per cent. More recent studies have reported that the lifetime prevalence rates are 1 per cent, 1.1 per cent and 2.4 per cent for bipolar disorder I, bipolar disorder II, and subthreshold bipolar disorder respectively. The prevalence of bipolar disorder I is similar in men and women while it is consistently more in women in bipolar disorder II.

Risk factors

There is a dynamic interaction between the constructs of ‘nature’ (genes) and ‘nurture’ (environment) in the causation of bipolar disorder. In determining the risk factors for lifetime vulnerability, genes play a pivotal role. For the onset of an episode of depression or mania, adverse life events such as bereavement, divorce, financial distress, relationship difficulties, may have some role to play. Factors such as stress, sleep disruption, substance misuse may also trigger mood episodes in genetically vulnerable individuals. Many women have their first episode of depression or mania in the postpartum period. Disruption of normal biological rhythms may precipitate the onset of manic or depressive episodes. This has been documented in relation to international journeys involving east-west or west-east travel with disruption of the body’s biological clock.

Age of onset and course of illness

Bipolar disorder is highly heritable, which means 70-80 per cent of persons with this disorder have a relative with either bipolar disorder or unipolar depression. The mean age of onset of bipolar disorder varies from 17 to 30 years. European data suggest a mean age in the late 20s, whereas the United States data suggest a mean age in the early 20s.

Most individuals (85 per cent) with bipolar disorder present to the clinician with an initial episode of depression. The duration of these episodes is typically between two and five months. Ten per cent of patients present with mania and this lasts around two months. Ninety to 100 per cent of individuals with bipolar I disorder will develop more mood episodes after the first manic episode. Some may develop a few episodes while some others may develop many. The general rule of the thumb is that previous episodes increase the risk of recurrence for future episodes. Over the course of the illness, 80 per cent of individuals have depressive mood episodes while the rest have a manic or mixed episode.

Undiagnosed bipolar disorder and health care utilisation

Bipolar disorder is a clinical diagnosis, and in that it is frequently missed. This is because hypomanic or manic episodes do not frequently come to the attention of the clinician. A person in hypomania may even enjoy the slightly elevated mood and refuse to count it as a part of the illness spectrum. Likewise, periods of intense anger and irritation, which may reflect irritable mania, may get missed altogether. Persons in hypomania and mania frequently lack insight into their illness for them to get a clinical consultation.

Added to this, there is often an interval between the onset of mood episodes and seeking help (on average 8-10 years), and it may sometimes take a decade for a bipolar patient to receive the right diagnosis. An overwhelming 20 to 40 per cent of bipolar patients are initially misdiagnosed to have unipolar clinical depression, and are administered antidepressant medications. This can worsen the longitudinal course of the disorder, and can result in poor long-term outcomes. When antidepressants are given without the cover of a mood-stabiliser in a person with undiagnosed bipolar disorder, a depressed person shifts to the opposite pole, and manifests extreme manic symptoms. This clinical phenomenon is called ‘switching’, and reflects in worsening of the person’s mood state.

Solutions

Bipolar disorder symptoms improve with treatment. Medication is the cornerstone of bipolar disorder treatment in conjunction with talk therapy. Talk therapy can help persons learn about their illness, increase their adherence to medications, and consequently prevent future mood episodes. Non-drug approaches include Interpersonal and Social Rhythm Therapy (IPSRT), Family Focused Treatment (FFT) and psychoeducation.

IPSRT is based on the premise that symptoms of bipolar disorder are triggered by disruptions in daily routines and sleep-wake cycles, and stabilisation of these routines is essential to mood stabilisation. IPSRT begins following an acute period of illness and focuses on stabilising daily and nightly rhythms as well as resolving interpersonal problems that may have preceded the acute episode. Patients learn to track their routines and sleep-wake cycles, and identify events (for instance, job changes) that may provoke changes in these routines.

Medications known as ‘mood stabilisers’ like lithium and dopamine-receptor blockers like risperidone are the most commonly prescribed type of medications for bipolar disorder. These medications are thought to correct imbalanced brain signalling. Since bipolar disorder is a chronic illness with frequent recurrences, ongoing preventive treatment is recommended. Psychiatrists frequently individualise the treatment, and this involves a process of trial and error to determine the best fit.

In case the person is suicidal or if medications have resulted in a suboptimal response, a highly effective brain stimulation modality called electroconvulsive therapy (ECT) may be used. While the person is under anaesthesia, a brief electrical charge is applied to the person’s temples or frontal bone, leading to a short-controlled seizure. This remodels brain signalling pathways and results in immediate relief. ECT has saved many a suicidal person from the clutches of imminent death.

Ruchi (name changed) has been a longstanding patient of mine. After recently having recovered from a depressive spell, she remarked, “Doc, do you think people will see me as a person or as someone who alternates between mania and depression?” I was at a loss of words for a moment, and then gathered myself to assure that, in all of her suffering, her individuality had remained intact. She was much more beyond her periods of mania and depression. She had been a wonderful daughter, a caring wife and an extraordinary mother.

The stigma surrounding this complex yet common neuropsychiatric disorder is immense. As a result, many people do not seek help. Lack of awareness also delays people from seeking help. With the right treatment, people with bipolar disorder can lead productive and fulfilling lives. Mental health is an inalienable right, and every person with bipolar disorder has the right to seek timely care.

Kulkarni is senior consultant psychiatrist, Manas Institute of Mental Health, Hubballi.

finding-peers-and-support-on-bipolarindia-com

Sun Sep 25 14:56:41 IST 2022

When bipolarindia.com was launched in 2013, it was merely a website with information to raise awareness about bipolar disorder. Gradually, the site saw conversations happening. This led to the formation of the peer support community, perhaps a first-of-its-kind in India.

In 2016, on World Bipolar Day—March 30—bipolarindia.com hosted the first national conference that saw people coming in from all parts of the country. “Our community is virtually connected 24x7 on the Telegram app,” says Vijay Nallawala, founder of bipolarindia.com. “The support that is provided is in the form of suggestions drawn from lived experience, recommendations from mental health professionals and crisis intervention.” Nallwala, 60, was diagnosed with bipolar disorder at 40, after struggling with depression for two-and-a-half decades.

Peer-led intervention can vary from someone from the community connecting over the phone to try and help a person in distress to a much more direct degree of intervention, says Nallawala.

“For instance, a member needed emergency hospitalisation, and our community crowdfunded almost the entire hospital bill for the month's treatment there,” he says. Peer support meets are held online and offline several times a month for its members who are based across India, he adds. The community also offers guidance on health insurance for mental illness and on how to apply for a disability certificate.

“The mere presence in the community leads to a person feeling less isolated,” says Nallawala.

Letswalktogether.org, an initiative by bipolarindia.com, is focused on providing livelihood for persons with mental health conditions.

“This platform has already attracted 30 CVs and we are in negotiations with companies that have inclusive policies,” says Nallawala. Significantly, the core team at the helm of this initiative is drawn mainly from the community.

when-the-mood-swings-wildly

Mon Sep 26 10:59:02 IST 2022

Anshul Shukla, 27, from Lucknow talks about his turbulent past almost dispassionately.

While doing his graduation, he had bouts of depression and changed his major four times. He started with engineering—first mechanical and then electronics—and later switched to humanities—English and Economics. During his graduation in Economics at Shiv Nadar University, he was suspended for violence, and he dropped out of college. “I had just come back from a month-long trip from northern Thailand, and I was feeling upbeat, energetic and very happy. It was showing in my behaviour,” recalls Shukla. “Earlier, I was feeling very depressed. I got into a fight and unfortunately I became a bit violent.”

The incident changed the course of his life. At 21, he was diagnosed with bipolar disorder (BD) by the psychiatrists at the university. He has had a bipolar depression crash twice following manic episodes (a state of mind characterised by euphoria, high energy and excitement). “During the manic phase of bipolar, I would feel on top of the world,” says Shukla. “My confidence was unshakable and I felt I could achieve anything. This would be followed by a state when I would feel suicidal and empty. Like everything was being taken away from me.”

Sometimes he would experience psychosis (a severe mental disorder wherein the patient loses touch with reality) and have delusions about his parents trying to harm him. “Things got so bad that the police had to be called in and I was taken in an ambulance to hospital. Such incidents have happened twice or thrice,” says Shukla.

Shukla finally completed his graduation and did his masters in Political Science from Indira Gandhi National Open University. But he is still struggling to keep a job. He never disclosed his ailment at any of his previous organisations for fear of discrimination and losing the job. “I still didn’t manage to stay at a job for more than three months,” he recalls. “I’m finding it difficult to focus on work or further education, because I can’t seem to stick to anything.”

The world is often unkind to people with mental health issues. At times, the hostility begins at home. “Most of my relatives don’t even think that this is a real thing,” says Shukla. “They think I’m lazy and don’t want to work and that is why I am making up such excuses. But my family supports me a lot.’’

Shukla’s maternal grandfather supposedly had bipolar disorder. “He used to take lithium,” says Shukla. “He used to get manic and sometimes come back home without clothes as he would give them away to strangers who needed them more.”

Shukla is currently on lithium and a long-acting depot injection. He had been on different medicines earlier. He switched to the current combination after the previous medicines stopped working for him.

The term ‘bipolar’ refers to the way one’s mood can change pathologically between two very different states of excessive happiness and sadness—mania and depression, explains Dr Muralidharan K., medical superintendent and professor of psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru. “In manic episodes, someone might feel very happy, irritable, or ‘up’, and there is a marked increase in the activity level,” he elaborates. “In depressive episodes, someone might feel sad most of the time, indifferent or hopeless, in combination with a very low activity level.” The mood changes that people with bipolar disorder experience are different from the usual mood swings. “It is a brain disorder that causes unusual pathological shifts in mood, energy, activity levels and the ability to carry out day-to-day tasks, that last a few weeks to months, continuously,” says Muralidharan.

People with bipolar disorder swing between both ends of the spectrum, that too without any apparent reason or trigger. “These changes are episodic in nature,” says Dr Preethi V. Reddy, assistant professor of psychiatry at NIMHANS. “The range of mood changes can be extreme, with the episodes being of two opposite polarities.”

Abhishek Mehta, 28, from Gandhinagar, is a worried man these days. He is unemployed, not for lack of trying. “I tried as many as 12 jobs, but couldn’t survive anywhere,” says the business management graduate. He tried his hand at varied jobs like customer service, finance, IT recruitment, but had no luck. “I used to get panic attacks and repeated bouts of depression and anxiety,” says Mehta. “I would have bipolar mania and paranoia (irrational suspicion, mistrust of people and a fear that someone is out to get you and conspiring against you) as well. All these took a toll on my professional life.” He has had panic attacks but never mania with psychosis at work.

People with bipolar disorder may experience psychotic symptoms in depressive as well as manic phases. Mehta had false beliefs that he held persistently. Delusions happened mostly in the manic phase of bipolar disorder, he says. Occasionally, he had hallucinations, too. “I would feel the ground was shaking,” he recalls. “Once, I saw my shadow moving while I was standing still. But mostly, it was delusions and paranoia.”

Mehta has no family history of bipolar disorder. Looking back, he says the turbulence of adolescence scarred him for life and perhaps acted as a trigger for his bipolar episodes. “There was a lot of bullying and abuse. I used to get teased for being overweight,” he says. “All that trauma kept building up. I was very sensitive and there was no way I could express my emotions. The brain and body can take only a certain amount of stress.”

Mehta then became quiet and withdrawn. He would often feel sad and dejected, and had a major breakdown in 2015. The bipolar depression with psychotic symptoms lasted two months. “I had delusions and I felt very impulsive,” he recalls. “I remember I lost a lot of weight prior to that…. Prior to the episode, I felt dizzy, too.” His mother—his pillar of support—took him to a psychiatrist and he was diagnosed with bipolar disorder. With medication, he is stable right now.

Mehta wants to work and be independent, but doesn’t know how. He thinks he would be a misfit in the corporate world. Bipolar disorder could affect every aspect of one’s life, says Mehta. “My girlfriend left me as I was not financially stable, though she knew about my mental health issues,” he says.

Bipolar disorder peaks between 17 and 30 years of age, says Dr Alok Kulkarni, senior consultant psychiatrist, Manas Institute of Mental Health. Even among the elderly diagnosed with bipolar disorder, it is very likely that the disorder would have started in young adulthood. It is quite rare to find new-onset bipolar disorder in the elderly, he says.

Across the world, the prevalence of bipolar disorder is equal in men and women. The National Mental Health Survey (NMHS) 2015-16 identified the prevalence to be 0.6 per cent in men and 0.4 per cent in women in India. The NMHS found that the prevalence was more in the urban population when compared to the rural population.

Prevalence of bipolar disorder in India is between 0.5 to 1.5 per cent, says Kulkarni. This means that, at any given point in time, 60-70 lakh Indians are living with bipolar disorder. These are staggering numbers for a country that has less than 9,000 psychiatrists for a population of 1.3 billion.

Access to psychiatric care had been a major challenge for Krishna, 25, from Uttar Pradesh. “There are very few psychiatrists in tier 2 and tier 3 cities,” he says. He now opts for online consultation.

Krishna, who works as a tutor for an EdTech company, was diagnosed with bipolar disorder at 17. He had his first manic episode while preparing for his IIT entrance exam. He had scored 91 per cent in his class 12 exams. “I was under tremendous pressure to prove my worth,” he says. He believes that people suffering from bipolar disorder or any mental illness can have a successful career if people around them are empathetic and have proper awareness. A huge fan of Dr A.P.J. Abdul Kalam, he dreams of launching a startup that will help students pursue their passion.

There are mainly two types of bipolar disorder—bipolar I and bipolar II. Bipolar I is when a person has one or more episodes of mania with an episode of depression in the past or vice-versa. In bipolar II, the patient will have episodes of hypomania, a less severe form of mania, with episodes of depression. People with hypomania tend to be cheerful and energetic. Hypomania is characterised by a decreased need for sleep. Even if the individual sleeps for just three or four hours, he/she will be fresh and active in the morning. There are no socio-occupational impairments or psychotic symptoms. Irritability is less common among people with hypomania. However, the depressive episodes in bipolar II episodes could be as severe as in bipolar I, says Dr Johann Philip, a consultant psychiatrist in Kochi.

Avantika B., 19, from Mumbai was diagnosed with bipolar II when she was 17. She experiences hypomania. “I sleep less, I eat less, and I think I am being productive but it is just a feeling. Being hyper makes me feel I am more productive but I’m not,” says Avantika, an undergraduate student of psychology at NMIMS, Mumbai. “I would be working 10 hours straight but it wouldn't really be as productive as when I am working 7 hours during my maintenance phase. I am able to work longer hours though because I tend to commit myself to more things when I am in hypomania.”

Avantika tries to go slow when she is in her depressive phase. “During depression, just making it to college is enough sometimes. It can get really suffocating and draining at times,” she says.

While there are other types of bipolar disorders like cyclothymia—highs and lows are not as extreme as in bipolar I and II—and unspecified bipolar disorder, they are relatively uncommon. “What we see in clinical practice conforms to bipolar I and II only,” says Dr Gagan Hans, associate professor of psychiatry at the All India Institute of Medical Sciences, Delhi.

Veena Malik, a 26-year-old filmmaker, musician and writer who grew up in Pune, describes hypomania as “an intense, elevated state where you can be extremely sharp, creative, and productive but can also be extremely angry, irritable and impulsive”. Malik, who has had recurring depressive episodes, was on medication for a year and a half.

It is important to differentiate between unipolar—characterised by either depressive or (more rarely) manic episodes but not both—and bipolar disorders to initiate the right treatment. Both disorders have strikingly different medication regimes and treatment approaches.

Varsha Verma, an engineering student from Kochi, would often fail to submit her assignments on time and perform poorly in her semester exams. She kept dropping out of her course as she was experiencing decreased energy levels, low mood, loss of appetite and poor sleep. Over 18 months, she approached several mental health experts, who put her on various antidepressants, but there was no slowing of symptoms. “On detailed evaluation, it was found that several past episodes of hypomania—discrete episodes of marginally elevated mood during which the patient was excessively upbeat, talkative, pleasant and spending too many hours in study without much sleep—were missed on her previous clinical evaluations. That changed her diagnosis from unipolar to bipolar depression,’’ says Philip, who treated her. He started her on a mood stabiliser and concurrent psychotherapy, which, he says, has helped her.

Antidepressants alone don’t work for most people with bipolar depression, explains Philip. “If antidepressants are given to a patient with bipolar depression, he or she may switch from depression to mania,” he says. “So it is very important to go through a clear history because the treatment approaches and medications are different for bipolar and unipolar depression.”

Bipolar disorder is more genetic than unipolar disorder, says Philip.

Long-term bipolar disorder can result in cognitive impairment leading to reduced cognitive functioning.

Bipolar disorder is rarely seen in children and adolescents compared to older adults. However, when it is present in this cohort, the elevated mood, restlessness and agitation associated with bipolar disorder is often mistaken for hyperactivity and wrongly diagnosed as Attention Deficit Hyperactivity Disorder, says Philip.

Ashik Raj, 12, from Chennai had a diagnosis of ADHD that had worsened with medication before he consulted Philip. “On multidisciplinary assessment and after evaluating his symptom profile, we realised the diagnosis is not ADHD but childhood-onset bipolar disorder, which is now known to have a poor prognosis without early intervention and treatment,” says Philip. “ADHD is sometimes treated with stimulants that often worsen the symptoms of bipolar affective disorder. It is therefore prudent to accurately identify and treat bipolar illnesses as early as possible for improved overall treatment outcomes.”

Substance abuse is quite rampant among people with bipolar disorder. That complicates things in terms of treatment, says Philip. Individuals with bipolar disorder are also at an increased risk of suicide, possibly because of impulsive behaviour.

The mainstay of diagnosis in psychiatry is case history. There are no brain scans or lab tests to detect bipolar disorder. “We don’t have any diagnostic tests to confirm it. So we rely on a carefully taken history from the family members,” says Hans. Clinicians often use diagnostic manuals like the Diagnostic and Statistical Manual of Mental Disorders and International Classification of Diseases to diagnose bipolar disorder. “At the end of the day, the diagnosis is made based on clinical experience looking at the diagnostic criteria,” says Philip. Hans also observes the patient over a period of time. “If the symptoms are not clear, we insist the patient gets admitted so we can observe his/her behaviour and record the illnesses and problems,” he says.

Bipolar disorder is basically a mood disorder. “What we look at is a change in mood from the baseline,” says Philip. The baseline could be different for different people. “What is baseline for me could be mania for you. So it is important to look at the individual’s baseline,” he says. Assessment scales are also helpful for diagnosis and treatment. Young Mania Rating Scale, a 11-item interviewer-rated scale, is widely used to assess manic symptoms. Beck’s Depression Inventory, a 21-item inventory, is useful for evaluating the severity of depression. Philip uses these scales mostly to see whether the symptoms have subsided after starting treatment.

Compliance with medication is necessary to manage bipolar disorder. “Psychiatric medications take 4-6 weeks to have their effects,” says Hans. “Taking medicines on long-term basis is very repulsive for most patients. They take medications for a few days and the moment they feel better they stop. The effect of medications goes away in a few weeks and they may have a relapse. The more episodes you have, your prognosis worsens.”

Mehta is currently on medication. “I take anti-psychotics and antidepressants. They cost Rs500 a month. At one point I used to take 13 medicines. Back then, my parents spent around Rs3,000 a month on my medication”, he recalls.

Anti-psychotic medications decrease symptoms of mania and psychosis. “The right mix of medicines can help treat the symptoms really well and live a stable life. I see my doctor every month. And I’m also doing therapy,” says Mehta. Therapy costs around Rs1,500 an hour. “Medicines help with the chemical imbalance in the brain while therapy helps with the psychological aspects like thoughts, mindfulness and behaviour and coping mechanisms,” he says.

Even people who experience just mania and no episodes of depression need treatment, says Hans. There is no cure for bipolar disorder. It is a chronic condition. “There can be multiple relapses,” says Hans. “You cannot say for sure which patients will have repeated episodes. It depends on several factors. There are patients who have had just one episode. At the onset, you cannot foretell whether other episodes will occur or not.”

Treatment-resistant depression often turns out to be bipolar depression. “One of the biggest controversies in psychiatry today is whether to prescribe antidepressants in bipolar depression or not,” says Philip. “Sometimes we do have to give a little antidepressant because they just don’t come out of depression otherwise.”

People process drugs differently depending on their genetic profile. White people seem to tolerate higher dosages than Asians, observes Philip. He recommends Transcranial Magnetic Stimulation for patients with treatment-resistant bipolar depression. TMS stimulates the left prefrontal cortex—responsible for mood regulation and positive emotions—and inhibits the right prefrontal cortex, associated with negative emotions.

For Malik, talk therapy has done wonders. She vented a lot before she learned to find some peace and stability.

Over the years, Avantika has learnt to live with bipolar disorder. She has made a lot of changes not just in her lifestyle but also at a cognitive level. Avantika believes it is really important to have a strong emotional support system and professional help to work through bipolar disorder. Her friends have been her pillars of support ever since she was diagnosed. “Sometimes it can get difficult to keep up with certain relationships when I have a depressive episode because not everyone understands it well; I wouldn't expect them to,” she says. “But sometimes it makes me feel invalidated or misunderstood. It's really important to have a strong emotional support system.” With therapy, she has been able to manage her life pretty well.

Therapy has been beneficial for Mehta, too. He feels more aligned with himself. He is part of Bipolar India, an online community that offers support for people with bipolar disorder.

Mehta feels bipolar disorder has made him a better human being. He now wants to spend the rest of his life helping others. “I love helping people going through mental health issues,” he says. “Even lending an empathetic ear helps keep their spirits up. I do it every day and it gives me immense joy.”

Some names have been changed.

the-amazing-journey-of-dr-sarthak-kamath

Sun Sep 04 13:59:05 IST 2022

Ruk jaana nahin tu kahi haarke…. Kaaton pe chalke milenge saaye bahaar ke (Do not stop even if you feel lost, you will meet the shadow of spring even as you walk on thorns.)

Anybody meeting Dr Sarthak Kamath would tend to recall this song from Imtihaan (1974).

Sarthak was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD)—a genetic disorder that causes muscular weakness, mostly in boys—at three that left him wheelchair-bound. Today, the 30-year-old spirited, bright-eyed Bengaluru resident is the first person with DMD to become a doctor and an MD in psychiatry.

His mother, Sneha, says that when Sarthak was three, he would fall repeatedly and his calf muscles had become prominent, medically known as compensatory hypertrophy of the calf muscles. “When we got him examined by our paediatrician, initially his condition was diagnosed as ‘flat foot’,” recalls Sneha. “Hence, special shoes with ‘insoles’ for the plantar aspect of the feet were provided.” But there was no improvement in Sarthak’s condition. At times, he would walk on his toes because his sole muscles were weak. “When he was five, special diagnostic tests like CPK (creatinine phosphokinase) and genetic tests were carried out at NIMHANS, Bengaluru,” says Sarthak’s father, K.N. Kamath, an engineer from Manipal Institute of Technology. The tests confirmed DMD. His parents were shocked. “We had to gulp down the bitter news like a ghora visha (horrible poison), since we could not discuss it with either of our parents,” says Kamath.

Till the age of 12, Sarthak somehow managed on his own, walking on toes and sitting down at frequent intervals. But then one day at school, he could not get up from the bench and he became wheelchair-bound. That was also the time when a repeat PCR (Polymerase Chain Reaction) test and a muscle biopsy re-confirmed his DMD diagnosis.

Sarthak was in class seven, and half the academic year was already over. The school said that they could not make arrangements for one student and asked his “parents to take the transfer certificate”. “The school did not even allow me to appear for my class seven final exams,” recalls Sarthak. “It was emotionally quite devastating for me.”

But his mother was not one to give up. Sneha kept looking for a school near home that would take Sarthak in without complaints and some compromise. “We owe it to Parvathy Vishwanath, principal of Acharya Shree Maha Prajna School, who, for Sarthak’s sake, got all class seven students shifted to the ground floor,” she says. “Though Sarthak had to repeat an academic year, we were happy to see him in a school environment, that too in our neighbourhood itself.”

Sneha, too, joined the school as a class teacher on the principal’s advice. That way, she could help Sarthak with his washroom needs and during lunch hour. When Sarthak was in class eight, a security guard would carry him to the second and third floor for certain classes, says Sneha. When Sarthak was 15, he underwent a minor surgical procedure to prevent tightening of calf muscles.

A challenge that Sarthak had to tackle on his own was the change in syllabus, from Central board to state board. But he took on the challenge with élan—he scored 91 per cent in his class ten exams. But it was not just academic books that he read in high school. Since he could not be part of the physical training/sports period, he took to reading novels, especially those by Dan Brown. A classmate who loathed the PT period would stay with him for those 45 minutes.

Sarthak decided to take science [Physics, Chemistry, Maths, Biology] in college despite people advising him against it. “Many people advised me not to pursue science, considering my condition, but I was determined to become a medical doctor,” he says.

Sarthak was especially fascinated by neuroscience, thanks to Dr Subbarao Belawadi, a general physician. He was in class nine then, and Dr Belawadi was teaching him to cope with his physical disability without letting it affect him emotionally. “Dr Belawadi used a method called ‘Modified Visualisation Therapy’, wherein I had to imagine what I wanted to achieve in my life, and simultaneously brush aside all negative thoughts associated with DMD, which used to creep in quite often,” says Sarthak. “His advice helped me manage my temper and focus on my ambition. I was also tremendously influenced by the story of Dr David Hartman, who became the first blind psychiatrist in the world.” He also counts theoretical physicist Stephen Hawking, paralympic Deepa Malik and Australian-American motivational speaker Nick Vujicic, born without arms and legs, among his role models.

While in high school, Sarthak learnt to play chess under the guidance of chess master Raja Ravi Sekhar. He also started playing music on the keyboard. In college, he won several prizes in quiz and debate competitions. “I even won a prize in the ethnic wear competition,” he says.

Sarthak took tuitions for his medical entrance exam, and got admission at M.S. Ramaiah Medical College in Bengaluru in the physically challenged category. He had secured fourth rank in the said category. Though his ranking in the general category (below 2,000) got him a seat in two colleges, he did not consider them as they were both outside Bengaluru.

When Sarthak joined the medical college in 2011, Dr Saraswathi Rao was the principal. When Sarthak’s parents came to meet her, she had asked them why Sarthak wanted to pursue a tough course like MBBS. “But the 19-year-old boy was very focused and single-minded about his career option,” she says. “His parents and paternal grandmother were equally committed to nurture his aspirations. We allowed him to make use of a helper for his washroom needs and for taking the lift. He did very well in his studies.” She remembers Sarthak playing popular songs on his keyboard at college functions. “Though always on wheelchair, he is a great motivator for many. M.S. Ramaiah Medical College has recorded his name with pride as a notable alumnus.”

During his second year in medical college, Sarthak underwent a neuro-regenerative rehabiliataion therapy at NeuroGen Brain and Spine Institute in Mumbai. “The therapy is a holistic treatment consisting of stem cell therapy in combination with a personalised rehabilitation programme, including physiotherapy, occupational therapy and psychological intervention,” says Dr Nandini Gokulchandran, deputy director and head of medical services and clinical research, NeuroGen Brain and Spine Institute. “Sarthak had shown improvement a week after starting the therapy. The range of movement in upper extremity had improved so that he could move his wheelchair. He could not repeat the therapy, as he became busy with his studies.”

It was the brain and its workings that kept Sarthak busy. During the anatomy class in his first year, he would find himself drawn towards the table where the brain was being dissected. “I was always curious and intrigued by the complex neuronic structure of the brain and its unique way of mega functioning,” he says. “During my internship, when my wheelchair could not fit through the door of the general surgery operation theatre, I was allowed to watch the surgery in the specialised neurosurgery OT. That again, in a way, provided more and more connection for me with the brain.” No wonder he specialised in psychiatry.

After his internship at M.S. Ramaiah Medical College, Sarthak did one year of senior residency in psychiatry at Victoria Hospital, Bengaluru. For his MD in psychiatry, he got admission in Kempegowda Institute of Medical Sciences (KIMS), Bengaluru, in 2017 under the general category and procured eighth rank in the Rajiv Gandhi University of Health Sciences, to which KIMS is affiliated. He took the assistance of a scribe only for his final year MD exams, he says. “Sarthak’s resilience is beyond his disability,” says Prof Dr Raghuram, who headed the psychiatry department at KIMS when Sarthak did his MD. “He has an untiring quest to achieve greater things in life. We ensured that he was always accompanied by a helper, especially when he had to move on the wheelchair to the outpatient wing of psychiatry.”

One’s school and college years are not just about education; they are also about the connections we make.

“Not everyone used to be friendly with me,” says Sarthak. “There were sympathetic stares from people who kept asking one another, ‘Ayyo paapa (what a pity), what is this guy on a wheelchair going to do?’ I would have preferred if people were empathetic instead of being sympathetic. Even [in junior college], there were grumblings from a few parents that students appearing for IIT entrance exam may not be able to focus because of my wheelchair. If I had studied psychiatry by then, I probably would have diagnosed the condition as ‘wheelchair-induced anxiety’ or ‘wheelchair-induced psychosis.”

But he did find some friends for life. Dr Siddarth Baindur, an ophthalmologist at the Maulana Azad Medical College, New Delhi, studied with him in his first school and saw how Sarthak struggled to get to the class on the higher floors. “But he never exhibited any remorse or sadness despite his physical disability,” he says. “He was very studious, hardworking and intelligent.”

Baindur later met him at inter-collegiate festivals and remembers him excelling at the quiz competitions. “He has a sharp intellect,” he says. “Now, being a psychiatrist, I am sure he will be far more empathetic to his patients than any one of us.”

Agrees Dr Aneeha, who was Sarthak’s batchmate in medical college, “Dr Sarthak’s ‘never give up’ attitude is his strength. He never allowed DMD to suppress his intellect.”

Sarthak recently got through his first level of Member of the Royal College of Psychiatrists, the UK. Since January 2022, he has been working as an assistant professor (psychiatry) at Ambedkar Medical College in Bengaluru. He also counsels four to five patients in a day.

Sarthak’s day begins at 7am. His helper assists him in his bath and with getting dressed for work. His breakfast consists of only two-three bananas and a protein-enriched beverage. He has no diet restrictions and eats both vegetarian and non-vegetarian food. His favourites though are Mexican chips and Konkani dal tadka.

Sarthak travels to college in a car with a driver. He keeps his attire simple: dark-coloured woollen or cotton pants and light-coloured shirts, either plain or striped. His father says work has become his priority and he seldom travels for leisure with the family. He had visited London along with his parents and younger sister Sanmita, who is an interior designer, when he was 12. But the good doctor does find time to unwind, watching movies on television and documentaries on OTT platforms, genre no bar. A geography buff, he is obsessed with the online game ‘Worldle’, where one has to guess the country based on its outline.

Sarthak undergoes physiotherapy at home for an hour every evening for about an hour. He is currently on steroid medication. Recent evaluation has revealed a good functioning of his heart and lungs. Most complications in DMD occur because of cardiac and respiratory deterioration, says Gokulchandran. “Sarthak’s cardiac output has been good and his respiratory condition has also been well maintained,” she says. “Continued physiotherapy, good care by parents and Sarthak’s optimism have all improved his quality of life and prolonged his lifespan.”

Sarthak's name means ‘fulfillment’ or ‘justification’, and therefore his motto is: Har pal yahaan, jee bhar jeeyo (Live every moment to your heart’s content). He just has one advice for people: “Do not view the person afflicted with DMD as disabled. Try to understand that the disease is a disability.”

thalassemia-disease-challenges-in-india

Sat Sep 28 13:42:47 IST 2024

Interview/ Anubha Taneja Mukherjee, member-secretary, Thalassemia Patients Advocacy Group

Anubha, a thalassaemia-major patient, is fighting for the rights of thousands like her. An advocate herself, she demands a ‘One Nation, One Blood’ law from the government. In an interview, she talks about the challenges of the disease and the way forward. Excerpts:

Do you think there is a lack of awareness about thalassaemia?

Yes, and I think the reason is that there is no national-level control or prevention programme like for polio or tuberculosis or even sickle cell anaemia, which is also a disability under the Rights of Persons with Disabilities Act 2016, just like thalassaemia. The situation is very strange.

Do you think the medical fraternity is doing justice to thalassaemia patients?

I would not doubt the intention of the medical fraternity at all because the very fact that I am sitting here in front of you means that I have been taken care of. The medical fraternity is trying to do their best. We have devoted doctors. But they can only do as much as the infrastructure allows them to.

What is the government’s response so far and what are your expectations?

Their are certain policies for thalassaemia but their implementation needs to be better. I would like to talk about a blood law, which is absolutely necessary. When I talk about thalassaemia, our most primary requirement is that of blood. Neither is there enough blood nor appropriate facilities with regards to it. There needs to be a massive campaign, a national-level campaign on voluntary blood donation because that is the safest form of blood and it ensures that a person is healthy and donating voluntarily. Second, donor selection and donor counselling are crucial. As we speak, there is a public interest litigation in the Supreme Court by the transgender community asking for a right to donate blood voluntarily. It is paradoxical that on one hand we lack blood, and on the other, a community that wants to donate is not able to do so. I agree that they fall in the high-risk category but rather than disallowing them we should develop enough infrastructure for proper blood screening. The government should mandate world-class blood screening methodologies. There is a spectrum of tests available varying in cost. The government needs to come up with policies, and prevention needs to be part of the legal and regulatory framework. These are some areas where urgent intervention is required.

At a workshop on blood transfusion, there was a point of contention over the affordability of tests like NAT, especially for the poor. How important does the government's role become in such a situation?

Certainly, there is a need for financial resources. The government should mandate tests like NAT across India and support infrastructural development. Like in Covid-19, where phased rolling out of the vaccine happened, a similar thing can be done with NAT.... There are Supreme Court judgments observing that cost cannot be an excuse for the government to deprive a citizen of their right. If people can be concerned about bad air quality in Delhi, then they should also be concerned about unsafe blood.

What keeps thalassaemia patients like you going?

It is thalassaemia that stops me and it is thalassaemia that keeps me going, too. If I did not have thalassaemia, I would not have had the survival instinct and a fighting spirit. Personally, I think that society has invested a lot in me. I have received blood from strangers. I feel indebted to them. I feel indebted to my parents because they brought me up in a normal way. I have got slapped for not doing my homework. My mother exposed me to debating. I want to do something for thalassaemia patients because if not me, then who?

What is the roadmap?

First and foremost, we want to talk about a blood law as much as we can. We are working with the government to come up with a draft for a blood law. Besides, screening method that the government considers the best should be mandated. There is a lot of talk about genetic editing and gene therapy. We would like to work with the government to make this accessible to Indian patients. And last but definitely not the least is prevention. ‘One Nation, One Blood’ is our vision. If one GST can happen, why can’t One Nation, One Blood? Different states are getting different types of blood. How can we allow that?

thalassemia-control-india-safe-blood-availability-challenges

Sat Sep 28 16:42:38 IST 2024

Nishtha Madan was diagnosed with thalassaemia when she was seven months old. “I wanted to overcome the limitations attached with the disease,” says Madan, now 35, and a special educator and development psychologist with the department of education, Delhi. “The credit of keeping me healthy goes to my parents. When I became an adult, I started trying to make myself more aware of the disease.”

Thalassaemia is a genetic blood disorder characterised by the reduced production of haemoglobin, the protein in red blood cells that carries oxygen throughout the body. It results in anaemia and can lead to severe health complications. Official figures say that there are nearly one lakh thalassaemia patients in India, with 10,000-15,000 new cases reported annually.

The country has one of the highest prevalence rates in the world, with regions such as Punjab, Gujarat and parts of the northeast showing particularly high carrier rates. “The situation is pretty bad in peripheral areas where awareness is low,” says Dr Piyasi Basu Thal, a thalassaemia-major patient herself. Thalassaemia-major, the most severe form of the disorder, requires regular (two-three weeks) blood transfusions to manage symptoms and prevent complications. “It is like we are sitting on a volcano all the time,” says Namitha Kumar, 46, who was diagnosed when she was four.

While the psychological burden of thalassaemia is telling, the economic cost is also significant. “Although thalassaemia is listed as a disability, there is no benefit for the patients. The government needs to bring reservation in education and employment for thalassaemia patients,” demands Madan.

Kumar, who has a PhD from the National Institute of Advanced Studies in Bengaluru, agrees. “Despite paying taxes, I get no financial support from the government,” says the academic who works with Opford, a platform for rare diseases. “I can afford health insurance but there are several others who cannot.”

Dr Aseem Kumar Tiwari, director, transfusion medicine, Medanta Hospital, says, “NAT (nucleic acid testing) comes at a cost and therefore its availability is more in the private sector.”

Policy interventions become all the more important with the carrier rate being so high in India because of the presence of several ethnic groups with varying levels of genetic predisposition. Lack of awareness and access to services exacerbate the situation. “Being a doctor myself, I have seen that professionals from my own fraternity are poorly informed about thalassaemia. The situation is worse in rural areas where awareness is alarmingly low,” says Thal, who works as a senior resident in the neurology department at PGIMER, Chandigarh. While urban centres are equipped with advanced treatments and regular blood transfusions, rural areas face challenges such as lack of medical facilities, and inadequate and unsafe blood supply. “There are fragmented guidelines when it comes to thalassaemia,” says Dr Rasika Dhawan Setia, director and head of department, transfusion medicine, BLK-Max Super Speciality Hospital, Delhi. “The attitude in rural areas is casual, which should not be the case as lives are equally important everywhere.”

Adds Thal, “NGOs, government bodies and community organisations should educate the public about thalassaemia, its genetic basis, and the importance of carrier screening.”

Former Union health secretary Apurva Chandra had said on International Thalassaemia Day, on May 8, this year: “Many people are still unaware of this disease and how this can be prevented. It is imperative that all stakeholders in this arena collaborate for a nationwide campaign to enhance awareness.”

Experts say that management of thalassaemia requires a well-coordinated health care infrastructure that includes blood banks, diagnostic facilities and treatment centres. The most crucial aspect, however, is the availability of safe blood. Referring to a case in Uttar Pradesh last year where 14 children undergoing blood transfusions tested positive for infections like hepatitis B, C and HIV, Madan says, “Blood safety is a major issue. There should be a standardised procedure for blood safety. All blood banks must ensure that only safe blood is provided to patients.” She also suggested penalties if anyone is found violating the rules and regulations in blood supply.

Adds Anubha Taneja Mukherjee, member secretary, Thalassemia Patients Advocacy Group: “There are four types of blood a patient is expected to get: profile-matched blood but without NAT testing, NAT-tested but without profile-matching, neither of the two and in some cases whole blood. That is the level of discrepancy.”

Technologies like NAT have come as a respite in ensuring safe blood for transfusion. NAT enables the screening of donated blood to reduce the risk of transfusion transmitted infections (TTIs) in recipients. “NAT can detect HIV, hepatitis B and C, syphilis and other pathogens in the window period, while other tests like ELISA and antigen cannot,” says Dr Ashok Yadav, head of department, transfusion medicine, MGM College, Indore. “Blood screening through non-NAT tests is not safe and blood banks should use NAT.”

Yadav welcomes the hub and spoke model being contemplated by the Centre. “We are implementing the model in our district as per which NAT-tested blood at our centre is distributed to blood banks in the periphery, ensuring that only safe blood reaches the patients in rural areas,” says Yadav.

A paper published in 2021 noted, “Technological advances have made blood safer for transfusions and adopting NAT in a resource-limited setting and a developing country such as India could impact blood safety in a big way.”

On the cost aspect, too, Tiwari is hopeful. “While the availability of NAT-tested blood is more in the private sector, there is no reason why the government sector cannot adopt NAT-tested blood as exemplified by states like Odisha in the recent past,” he says. “Also, its wide adoption will automatically bring down the costs.”

The Centre has taken steps to address the thalassaemia burden through various initiatives. The thalassaemia control programme aims to provide comprehensive care, including regular blood transfusions and other supportive treatments. As India has the largest number of children with thalassaemia major, the health ministry has been running a Thalassemia Bal Sewa Yojana since 2017. The ministry recently advocated inclusion of compulsory thalassaemia testing in the existing reproductive and child health programmes under the National Health Mission.

However, experts and patients expect the government to do more. “It is the government’s duty to provide us safe blood and it can only be done through a stringent regulatory framework,” says Mukherjee. “The government cannot leave our safety to the whims and fancies of 3,000 blood banks.”

The thalassaemia situation in India is both challenging and hopeful. By continuing to focus on prevention, treatment and support, India can make substantial strides toward improving the lives of patients and ultimately reduce disease burden.

While a combination of government efforts, health care providers and NGOs can lower the burden, patients themselves are driving the change. “I was an active and explorative child,” says Madan. “As I grew I did not let thalassaemia affect my decisions. Through awareness about the disease, I figured out how to strike a balance between ambitions, health and relationships.”

Adds Kumar: “We have suffered the impact of thalassaemia throughout our lives. It becomes our responsibility now to empower others to make their lives better.”

For the first time, India Gate turned red on International Thalassaemia Day this year to show solidarity with the patients. “We did it,” wrote a group of thalassaemia patients on X. It is an optimistic beginning for thousands of patients who are courageously fighting for what they truly deserve.

neurological-disorders-causes-symptoms-treatment-nerve-damage

Sat Sep 28 13:35:53 IST 2024

The command centre: The brain gathers data from organs such as the eyes, ears and skin to monitor both the external environment and internal conditions. It meticulously processes this input, interprets it and integrates it with memories and knowledge to formulate appropriate responses. It sends signals to muscles and glands through the body. Be it the movement of a limb, the secretion of hormones, or the regulation of vital functions like heart rate, digestion and temperature, the neurological system ensures these actions occur seamlessly to maintain internal balance―homeostasis.

The brain also enables higher cognitive processes essential for human experience. It facilitates thought, reasoning, and complex decision-making. The intricate network of neurological processes supports everyday actions and shapes our understanding of the world and ourselves.

“I am a bundle of nerves”: From a doctor's perspective, when someone says that, they are likely describing feeling extremely nervous, anxious, or stressed. It is a state of heightened emotional arousal and physiological readiness for action. Metaphorically, it refers to the sensation of heightened nervousness, where one might feel tense, jittery, or overwhelmed by emotions. Physiologically, this feeling can be attributed to the activation of the sympathetic nervous system, which is responsible for the fight or flight response. During times of stress or anxiety, the sympathetic nervous system releases hormones like adrenaline, causing increased heart rate, rapid breathing, and heightened alertness. These physical responses prepare the body to react quickly to perceived threats or challenges. Being such a bundle underscores the interconnectedness between our emotions and the nervous system’s response.

Physical stress and causes: Conditions like arthritis and autoimmune diseases can trigger inflammation, exerting pressure on nerves and potentially leading to pain and dysfunction. Compression resulting from herniated discs, bone spurs, or tumours can compress nerves, causing pain and impairing nerve function. Diseases like diabetes can result in poor blood circulation, which can damage nerves over time because of inadequate oxygen and nutrient supply. Imbalances in electrolytes or deficiencies in essential vitamins such as B12 can impact nerve health, affecting their ability to transmit signals effectively. Viral or bacterial infections can directly damage nerves or provoke inflammation. Traumatic events such as accidents or surgical procedures can physically damage nerves, leading to symptoms like pain, numbness, tingling, and muscle weakness.

The role of mental stress: Stress profoundly affects neurological health through multiple mechanisms: it alters brain structure, leading to potential memory and cognitive impairments by impacting areas like the hippocampus and prefrontal cortex. Stress disrupts neurotransmitter levels such as serotonin and dopamine, contributing to mood disorders like depression and anxiety. Additionally, it induces brain inflammation linked to conditions such as multiple sclerosis and Alzheimer's disease, exacerbating neurological symptoms and disease progression. Stress impairs neuroplasticity (the brain’s ability to change and adapt), hindering recovery from injuries and cognitive deficits, and exacerbates psychiatric disorders and neurological conditions like epilepsy and migraines. Furthermore, stress disrupts sleep patterns, affecting brain function and increasing the risk of neurodegenerative diseases, while chronic activation of the sympathetic nervous system can lead to headaches, dizziness, and chronic pain syndromes.

Can nerves be healthy or diseased stand-alone? Yes, although their health is intricately connected to overall bodily factors. Diseased or damaged nerves can stem from a variety of conditions such as neuropathy (nerve damage), traumatic injuries, infections, autoimmune disorders like multiple sclerosis, or metabolic disorders such as diabetes. These underlying issues can directly impair nerve function, manifesting in symptoms like pain, numbness, weakness, or loss of function in the affected areas. While nerve health is influenced by local factors within their structure and function, their overall wellbeing is intertwined with systemic health. For instance, conditions like diabetes can lead to neuropathy because of prolonged high blood sugar levels damaging nerves over time. Similarly, autoimmune diseases can cause inflammation that affects nerve tissue directly.

Treatment takes an overall look: Diagnosing and treating nerve-related disorders often involves considering both local nerve health and systemic factors impacting overall bodily health. Effective management typically requires a comprehensive approach addressing underlying causes, promoting nerve repair, and managing symptoms to restore optimal nerve function and improve quality of life for patients.

Symptoms to watch out for: Pain, which can be sharp, burning, or throbbing along the nerve pathway, alongside sensations of numbness or tingling. Muscle weakness which makes it challenging to move or control muscles associated with the affected nerves. Sensitivity changes such as heightened responses to touch or temperature, and alterations in reflexes are also typical. Some individuals may experience a burning sensation, particularly in the hands or feet, or notice a loss of coordination leading to clumsiness. In severe cases, there could be partial or complete paralysis of affected muscles. Additionally, autonomic symptoms like changes in sweating, blood pressure, or digestion may accompany nerve damage. It is crucial for individuals experiencing persistent or concerning symptoms related to nerve function to seek prompt medical evaluation and care.

What happens when the nerves are not functioning properly? Several physiological processes can be disrupted. These include a failure by the nerves to transmit electrical signals effectively between the brain, spinal cord, and other parts of the body. This can lead to problems with sensory perception (such as numbness or tingling), motor function (weakness or paralysis), or autonomic functions (such as irregular heartbeat or digestive issues). In cases of nerve damage or disease, the structure of nerve cells (neurons) and their supporting tissues may deteriorate. This can result in the loss of axons (nerve fibres) or damage to the myelin sheath (the protective covering around nerve fibres), compromising nerve conductivity and function. Nerve damage often triggers an inflammatory response within the affected area. Inflammation can further damage nerve tissue and exacerbate symptoms, leading to pain, swelling, and loss of function. Nerves rely on neurotransmitters―chemical messengers―to transmit signals between neurons. When nerves are dysfunctional, neurotransmitter levels or their release mechanisms may be disrupted, affecting communication within the nervous system and potentially leading to neurological symptoms such as mood disorders or cognitive impairment. In addition, there is oxidative stress (imbalance between free radicals and antioxidants), mitochondrial dysfunction (affecting energy production), protein misfolding (leading to cellular damage), and changes in neuroplasticity which in turn limit the brain’s ability to adapt and recover from injury or disease. There can also be cascading effects on other bodily systems.

Extreme forms of nerve damage: This encompasses conditions that severely affect daily life and bodily functions. Guillain-Barré Syndrome is an autoimmune disorder causing rapid muscle weakness and paralysis because of peripheral nerve damage. Spinal cord injuries from trauma can lead to partial or complete loss of sensation and motor function below the injury site, resulting in paralysis and loss of bladder control. Peripheral neuropathy, often linked to diabetes or infections, causes numbness, tingling, and pain in the hands and feet. Complex Regional Pain Syndrome manifests as chronic, intense pain, swelling, and skin changes in a limb after injury. Trigeminal Neuralgia induces sudden, severe facial pain triggered by touch or movement. Other conditions like ALS cause progressive nerve cell loss, leading to muscle weakness, paralysis, and ultimately death.

Can impact on nerve health be fatal? While not all nerve damage directly results in fatality, severe neurological complications can severely impact quality of life and lead to secondary health issues that may be life-threatening. Traumatic brain injuries, strokes resulting from interrupted blood flow to the brain, and neurodegenerative diseases like ALS and certain forms of dementia can lead to irreversible nerve damage and ultimately be life-threatening. Infections affecting the nervous system, exposure to neurotoxic substances, and complications of conditions like diabetes and substance abuse can also pose significant risks.

The impossibility of a complete turnaround: Nerves have limited ability to regenerate and restore themselves to a previous state of health once they have been damaged. The extent of recovery largely depends on the type and severity of nerve damage, as well as individual factors such as age, overall health, and the effectiveness of treatment. Peripheral nerves, which are located outside the brain and spinal cord, have a better capacity for regeneration compared to nerves within the central nervous system (CNS). If peripheral nerves are injured, they can sometimes regenerate over time, especially with appropriate medical intervention and rehabilitation. Regeneration is often slow and may not fully restore nerve function to its original state. Damage to CNS nerves, such as those in the brain or spinal cord are more challenging to repair. These cells do not regenerate as effectively, and the formation of scar tissue can hinder recovery. This is why conditions like spinal cord injuries and neurodegenerative diseases often result in permanent damage and loss of function.

New approaches to promote nerve regeneration: Stem cell therapy, nerve grafts, and neuroprotective treatments. These treatments aim to support nerve growth and repair, although their effectiveness in restoring nerves to their former health remains an ongoing area of study.

What is good for the nerves? Engaging in physical activities and strength training enhances blood flow and reduces inflammation, which supports overall nerve function. Stimulate your brain through activities like solving puzzles, reading and learning new skills as this promotes neural plasticity and cognitive function. Quality sleep is crucial for nerve repair and overall brain function, facilitating the consolidation of learning and memory processes. Meditation, breathing exercises, and yoga reduce stress, which in turn supports nervous system health by lowering inflammation and promoting relaxation.

Elements of an optimal diet: Consuming nutrient-rich foods, particularly those rich in vitamins B12 and D, omega-3 fatty acids, and antioxidants, supports nerve health and helps in maintaining the integrity of nerve cells. Such foods include fish, walnuts, berries, dark chocolate, leafy greens, whole grains, eggs and dairy products. Limit alcohol, trans fats and processed foods.

Bad for nerves: A sedentary lifestyle causes poor circulation, increasing the risk of nerve damage and compromising overall nerve health. Prolonged stress can have detrimental effects on the nervous system, contributing to conditions like anxiety, depression, and impaired cognitive function. Diets high in sugar, unhealthy fats, and processed food can negatively impact nerve function by promoting inflammation and oxidative stress. Excessive alcohol consumption and drug use can cause direct damage to nerves and impair brain function. Inadequate sleep disrupts neural communication and hinders nerve repair processes, potentially impairing cognitive function and overall nerve health.

Do not glamourise being busy: Set boundaries by establishing work hours and stick to them. Schedule regular breaks to rest and recharge. Practice stress management through techniques like mindfulness and deep breathing. Monitor your workload by assessing and prioritising tasks to prevent burnout. Advocate for work-life balance and wellbeing at your place of work.

inito-aims-to-revolutionise-home-diagnostics-with-biotech-and-ai

Sat Sep 28 13:32:38 IST 2024

As they paddled through the water on a kayak during an adventure trip, Aayush Rai and Varun A.V. had a conversation that changed everything. "We were working for Siemens, which is a large med-tech company, and it became clear they wouldn’t sell anything for less than a few crores,” Rai recalls. “That was when we realised if we wanted to create something genuinely impactful, we'd have to do it ourselves. So we decided to leave our jobs and build something of our own."

The result was Inito, a health-tech startup which introduced the world’s first―and still the only―fertility monitor. It is capable of measuring all four fertility hormones on a single test strip.

In November 2020, this monitor―a compact device that enables smartphones to perform lab-grade fertility diagnostic tests at home―earned regulatory approval from the US Food and Drug Administration.

Inito's vision, however, goes beyond fertility. “We are here to build tools that allow individuals to understand what is happening in their body,” says Rai. “Our core vision is to create a device or platform that lets you perform dozens of diagnostic tests at home, giving you access to your own data. Fertility is just the starting point of that journey.”

At Siemens, Rai and Varun―both IIT alumni―worked in the R&D centre, which tackled a wide range of projects. After leaving Siemens, they did not want to work on another mundane project; they wanted to create solutions for tough problems. “Med-tech appealed to us because it truly impacts people’s lives, and we are seeing that impact now,” says Rai. They chose fertility as the opening point because of its significance and it was an underserved issue that people did not talk about enough. “Yes, India is the most populous country, but India also has the largest number of couples with fertility issues,” he says. Notably, the company drew its name from the Latin phrase Ab initio, which means 'from the beginning', reflecting how their application supports millions in the journey of creating new lives.

When Rai and Varun set out to develop their product, most ovulation tests on the market predicted fertile days by tracking oestrogen and Luteinizing Hormone (LH). However, they did not measure the hormone that actually confirms ovulation―PdG, the urine metabolite of progesterone. Also, most tests provided simple “yes/no” results. In contrast, Inito offers real numerical values for fertility hormones and tracks up to six fertile days, confirming ovulation by measuring oestrogen (which rises 3-4 days before ovulation), LH (which surges 24-36 hours before), PdG (which rises after ovulation), and FSH (to track follicle growth).

By measuring these real values, Inito personalises the results for each user. “So, the way to think about this is as a combination of a device, test strips (where biochemical reactions occur), and an app,” says Rai. “You put a sample on the test strip―currently, it is a urine sample―and then insert it into the device. The device analyses your hormones, and the software tracks the data trends to help interpret the results. That is the core model we have built. We have completed nearly 10 million tests, and we now hold the largest fertility hormone dataset globally, which helps people understand their results more accurately.”

The application has a precise sensor and a software layer powered by AI. “This AI helps identify errors, for example, if a user did not apply the sample correctly. Another way AI works is by analysing hormone trends and explaining to the user what the results mean―for instance, if someone did not ovulate in a cycle, we can inform them of that by looking at hormone patterns,” says Rai.

Last November, Inito raised $6 million and it is working on taking the fundamental tech applied in its fertility monitor and translating it into numerous other tests. For instance, it is building a test that helps track the progress of pregnancy. It is also working on tests for thyroid, Vitamin D and hormone levels. “There is no home-based test that can tell if your pregnancy is going well,” explains Rai. “Similarly, no home-based tests exist for vitamin D or male hormones. So, we are talking about things that are non-existent.”

Inito has set its sights on expanding to 100 countries shortly. Currently, the app is available only for iPhone users; it will soon be available to Android users.

The company’s primary source of talent is India’s premier technological institutions. Rai was a founding member of the robotics club and head of the electronics club during his student days at IIT Roorkee. “I didn’t attend many classes, but this is what I was doing for four or five years. These clubs might seem like just student groups, but many big companies have emerged from them,” he says.

Inito’s early recruits came from the networks Rai and Varun built during their college years, and many of them now hold key positions at the company. “For example, the person who leads our bioinformatics domain is a junior from my college,” says Rai. The head of biotech was hired on reference by a professor from IIT Madras, where Varun did his B.Tech and M.Tech.

India has not produced many global companies in med-tech, historically. However, innovators like Rai and Varun are working to change that, creating Indian solutions for global health problems, one step at a time.

narcissistic-personality-disorder-symptoms-treatment-solutions

Sat Sep 28 13:02:45 IST 2024

Anjana A. Karumathil, Associate professor of practice at IIM, Kozhikode

Think of the most charming, ambitious and successful, but entitled, arrogant, short-tempered and manipulative person you know. Remembered anyone instantly? Are they your friend, boss, or family member? Do you love and hate them? Congrats! You just identified a narcissist, and you are not alone: one in 16 people are manipulated by narcs.

Psychologist Dr Ramani Durvasula calls narcissism the second-hand smoke of mental disorders. Narcs don’t recognise how cancerous they are, but those around them do. Since narcs believe they are perfect, they rarely seek therapy. However, those absolutely destroyed by them consult shrinks, wondering what they did wrong.

Narcissism is named after the handsome Greek god Narcissus, who fell in love with his reflection and died from languor. Sigmund Freud introduced the term to clinical psychology in his 1914 treatise ‘On Narcissism’. Robert Waelder from Freud’s psychoanalytic society first described a narcissistic personality thus: contempt for others, intense preoccupation with self-superiority, overvaluation of cognitive abilities, and no empathy for others. While most people make moral decisions using explanations like “I must not do or think this, it is immoral or unethical; my parents taught me so”, narcs think “this should not be, as it does not align with my noble personality”. Psychiatrist Dr John Nemiah described narcs as individuals with unrealistic goals and insatiable craving for admiration, intolerant of imperfections in themselves and others.

Narcissism is endemic in modern workforces and its impact remains underrated: it could easily be called “being successful”. Narcs are experts at working corporate and government systems, switching on their charm to further their agenda while knocking down anyone blocking them. Our systems reward this behaviour as shareholders don’t care about empathy, especially among men, to subordinates (more men are narcs than women). Studies show that empathetic employees earn less than narcs, driving narcs to top jobs where they continue to lie, cheat and manipulate others physically, mentally and often, sexually. All narcs demonstrate such traits to some degree, but when taken to extremes, it becomes narcissistic personality disorder (NPD), according to the Diagnostic & Statistical Manual of Mental Disorders, the psychiatric Bible. Such people experience poor impulse control, remain self-obsessed, and are depressed because they fail to reach their goals. NPD requires ongoing therapy and counselling. Official stats suggest that 3 per cent of the population has NPD; actual numbers may be higher.

Are narcs born or made? Research says mostly made. Parents who set unrealistic standards for children create narcs extremely demanding of themselves. Such parents may leave their children feeling unloved when they fail to reach these goals. Thus, these children become enraged when facing setbacks and lean into aspects of themselves that their parents love. Other parents idolise children, creating a ‘God complex’ where children are never wrong, a breeding ground for narcs. Psychiatrist Dr Otto Kernberg suggests that NPD manifests as the unremitting search for brilliance, power and beauty. Their mental pathology shows through superficial friendships, chronic emptiness, boredom, and exploitation of others. The most common narcs are grandiose: they brag, show off, post too many selfies, and believe they are special. Covert narcs behave like the world owes them something; they seem sad and believe they are ahead of their time. Communal (hashtag) narcs often volunteer and proclaim to save the world, but only to get the photos, hashtags and validation. The most toxic are malignant narcs who are charming on the outside but lie, steal and demean others with abandon.

In a study titled On the narcissistic state of consciousness, psychoanalyst Dr Sheldon Bach says you can identify narcs by observing how they perceive themselves and others, speak, follow through, and control moods. They talk endlessly in circles about themselves using “I…”, but for others, they use abstractions, like “one feels…”. They will tell you they are busy but closer examination may reveal fruitless pseudo activity. They have intense, frequent mood swings, jubilant one day and raging the next. They may blame their tardiness on circumstances. Are they sweet to you but mean to the waiter? Ding. Charming to the boss but screaming at subordinates? Red flag. Just met you, but calls you soulmate? Run. Treated you like gold until marriage but ignores you now? Sorry, yes.

Your best defence is distance. Be cordial and flatter them if necessary, but stay emotionally detached. Limit your conversations and if you are the target of their disrespect, silently withdraw. If they are your family member, speak when necessary, but develop other healthy friendships. Never get close in the hope of changing them, lest you end up at Dr Ramani’s clinic.

Remember the narc you identified earlier? Could someone else have identified you?

light-pollution-health-effects-solutions

Sat Sep 28 12:58:59 IST 2024

While the world focuses on plastic waste, chemical pollutants in oceans and smog-filled air, one sneaky culprit often goes unnoticed: light pollution.

Humans are designed to live in a 24-hour cycle where light and darkness follow a natural diurnal rhythm. Light is crucial in regulating our circadian rhythm―our internal clock that tells us when to be awake and when to rest. It also influences melatonin production, a hormone vital for sleep.

The relationship between circadian rhythms and nighttime light exposure is profound. Circadian rhythm governs essential body functions like sleep-wake cycles, hormone regulation and metabolism. The suprachiasmatic nucleus in the hypothalamus acts as the master clock, aligning these processes with external light-dark cycles. However, exposure to artificial light at night, particularly blue light, disrupts this balance. It suppresses melatonin production, making it harder to fall asleep and lowering sleep quality. This disruption can lead to a range of health problems, including sleep disorders, mood swings and metabolic imbalances.

Notably, researchers at Rush University System for Health in the US recently established that there is a link between nighttime outdoor light and Alzheimer’s disease. Researchers warn that an exposure to high levels of light pollution at night could significantly increase the risk of Alzheimer’s, especially in adults under the age of 65.

The study analysed data from 48 American states, correlating nighttime light pollution with the prevalence of Alzheimer’s disease. Researchers examined light pollution maps and incorporated medical data on Alzheimer’s risk factors, categorising groups based on varying levels of light intensity. They uncovered a connection between light exposure, disrupted circadian rhythms and Alzheimer’s risk. Excessive nighttime light can disturb circadian rhythms, leading to inflammation, which heightens susceptibility to diseases like Alzheimer’s.

Dr Robin Voigt-Zuwala, the lead investigator, noted that certain genetic factors associated with early-onset Alzheimer’s may also increase sensitivity to nighttime light exposure. Younger individuals, often living in urban areas with higher light pollution and modern lifestyles that increase nighttime light exposure, were found to be particularly at risk.

Fortunately, the researchers suggest that simple measures, such as installing blackout curtains or using an eye mask while sleeping, can reduce exposure to nighttime light. However, they are yet to study the effects of indoor lighting at night or how it may impact health. So far, the evidence is limited to the US population, and they emphasise the need for further research to fully understand the connection between outdoor light pollution and Alzheimer’s across demographics.

padmini-janaki-ceo-of-mind-and-mom-promises-to-be-with-women-on-their-fertility-journeys

Sat Aug 31 13:50:41 IST 2024

What can poverty teach someone? “A lot,” says Padmini Janaki, 33, founder and CEO of Mind & Mom, a health tech firm that has helped over three lakh women on their fertility journeys since its inception in 2021. Growing up as the daughter of a single mother who worked multiple jobs―from selling flowers on the streets to being a salesgirl in garment shops―Padmini credits Janaki with instilling in her the fundamentals of entrepreneurship.

“My mother had to figure out so much just to pay my school fees and [to meet household needs],” she recalls. “We had to find solutions for everything, which fostered an entrepreneurial mindset. For instance, during festivals, we would think about where to put our stalls to sell flowers. My mother always found ways to make things work. This taught me invaluable entrepreneurial skills. My friends in school also were not wealthy, but they were incredibly street-smart and resourceful.”

Padmini says she has always been passionate about technology and helping women. Through her initiative Frozen Tomato, which she founded in 2012, she has helped poor single mothers get jobs. She founded Mind & Mom after a six-year stint with PayPal. “I come from a tech background, and solving problems with technology, especially AI, fascinated me,” she says. “Helping women in their careers―particularly those transitioning back after a career break―became a personal mission. I was doing it constantly. So, I took a step back and analysed my passions. I realised that two things came naturally to me: being part of women’s journeys and working with technology. Combining these passions led to the creation of Mind & Mom.”

The core concept of the company initially raised several eyebrows, given that India is already the most populous country. “For many women in India, having a baby is a natural choice. But sometimes it does not happen, whether due to PCOD (Polycystic Ovarian Disease), male partner issues, or other reasons,” she says. “These women often try multiple options, spending significant amounts of money.”

Padmini notes that some people question why, in a country with such a large population, people don’t just adopt or get a dog instead. “But when you are the one facing the problem, it is not that simple,” she says.

Mind & Mom leverages artificial intelligence, data science and behavioural science to offer personalised guidance, support and education to clients. Women begin with the startup’s virtual fertility coach, which tells them natural pregnancy methods tailored to their age and lifestyle. The company reports that about 10 per cent of users conceive within 60 days. For those who don’t, a 90-day fertility boot camp is available, focusing on mental, physical, and nutritional health with expert guidance. If necessary, clinical intervention is suggested, including free checkups and tests, with doctors at M&M-powered fertility clinics guiding them.

“I wanted to support women in whatever choices they make, whether it is deciding not to have a baby in their 30s, exploring egg-freezing options, managing PCOD or considering alternatives to IVF,” says Padmini. “As a virtual partner, we have helped women across India, offering a non-judgmental space for them to explore their options. But I realised that seeing a doctor in person is a completely different experience. That is why we expanded into the clinic space as well.” This new brand of physical clinics―currently only in the southern states―was named LIVF, and became a subsidiary.

Nafeeza (name changed), 32, had been trying to conceive for over two years when she first visited a LIVF centre after attending an educational event on PCOS (Polycystic Ovarian Syndrome). At the centre, she underwent a comprehensive assessment, and her personalised treatment plan included lifestyle modifications as well as medication to induce regular ovulation and to manage other symptoms. Mind & Mom provided regular monitoring and adjustments to optimise her treatment, along with emotional support for Nafeeza and her husband. After several months, her menstrual cycles became more regular, her hormonal imbalances associated with PCOS improved, and she successfully conceived.

Notably, the first version of the Mind & Mom app was a period-tracking tool, initially focusing on users in Tamil Nadu. Padmini used her resourcefulness to give the app its initial boost. “In 2021, when we started, we did not have much funding to spend on Google or Facebook ads. In south India, especially Tamil Nadu, it is common for people trying to conceive to offer a Krishna thottil (a cradle) at temples. So, our first campaign involved being present at these places with placards featuring our app’s QR code, reaching out to those making the offering. So, it was a campaign with zero investment.”

Next, Padmini’s team began visiting fertility hospitals and clinics, and encouraging patients to download the free app. “We did this for almost six months, but it was not sustainable,” she recalls. “What worked for us was leveraging corporate connections. As I come from PayPal and had a strong LinkedIn following, I offered free talks on women’s health at various companies, even bringing in a doctor for the sessions. The only thing we asked was for employees to download our app and use our free services. This approach helped us gain our initial downloads.”

Padmini also notes that from the start, Mind & Mom has focused on scalability and sustainability. “That is why we began as a digital-first health company―because it is virtual. Even with our in-person clinics, we aim to keep them as asset-light as possible. Nearly 70 per cent of our hospitals and assets are underutilised. With so many existing hospitals and medical colleges, we are not planning to build anything new or reinvent the wheel.”

As Mind & Mom is not investing a lot in physical infrastructure, she says, it helps reduce costs by around 50 per cent when it comes to fertility treatment.“And the patients are also happy,” says the entrepreneur, adding that she is fast expanding the service to various parts of India.

sports-mastery-involves-training-the-brain

Sat Aug 31 13:16:32 IST 2024

To triumph over competition, athletes must be the fastest, strongest and the nimblest contenders. Record-breakers must push even further, surpassing the limits of human capability.

But besides their physical prowess, athletes harness a unique set of mental skills that allows them to succeed in their respective disciplines. Numerous studies have shown that athletes' brains differ from non-athletes' brains.

Visual cue processing

The ability to quickly soak up visual information and make decisions accordingly is a crucial skill for athletes, especially those who play team sports. A 2013 study in the journal Scientific Reports revealed that professional ice hockey, soccer and rugby players are better visual learners than people with lower-level abilities in the same sports.

The pros were compared with 'elite amateurs'― in this case, US college athletes and players from a European Olympic sport-training centre. They were also compared with non-athlete university students. Compared with both groups, professional athletes performed better, and improved faster, on a task that tested their ability to focus on and track objects moving across a screen. In other words, their brains are more skilled at processing “dynamic visual scenes”, or the world moving around them, the study authors found. The elite amateurs were also better at this than the non-athletes.

This knowledge could be used to enhance an athlete's training and determine the best time for them to return to their sport following an injury, said Jocelyn Faubert, author of the 2013 Scientific Reports study and a professor at the University of Montreal School of Optometry. For example, assessing how efficiently an athlete can process visual information and not make judgment errors could prevent them from coming back too early and putting themselves in danger, he said.

Muscle memory

Acrobatic athletes, such as divers and gymnasts, need to be exceptionally good at performing sequences of movements without consciously thinking about it― a phenomenon colloquially known as 'muscle memory'.

A 2023 study in The Journal of Neuroscience revealed that the brain plans and coordinates repetitive movements like those performed by athletes and trained musicians by quickly “zipping” and “unzipping” crucial information about them. At first, the sequence and timing of the steps are programmed separately in the brain, but with training, these individual elements become seamlessly integrated into one burst of coordinated brain activity. This process involves a network of neurons in the cortex―the outer layer of the brain―that regulate movement.

Predictions

In baseball, a batter must make quick and accurate predictions about the fate of each ball the pitcher throws. For example, will it enter the strike zone, and how fast will it come at them?

It turns out that, depending on what the batter predicts, their brain activity changes. Specifically, neurons within a region of the brain called the left ventral extrastriate cortex vary in these scenarios, according to a 2022 study in the journal Cerebral Cortex. This is likely because of batters' unique ability to relate visual cues about a pitcher's movements to the potential path of the ball, the authors said.

Structurally speaking, research has also shown that professional divers, for example, have a thicker superior temporal sulcus (STS) than novices. The STS is a region of the brain that plays an important role in the perception of movement of other living things and it also helps decipher the intentions behind those movements. This makes sense in the context of diving, as these athletes often learn by watching other divers' performances, the authors said. And, of course, this is true of many sports.

Balance

Acrobatic athletes, such as gymnasts, have remarkable proprioceptive skills, or the ability to sense where their bodies are in space. An intricate network of neurons in the cerebellum, a region at the base of the brain, enables these athletes to rapidly course-correct in the air or keep their balance on an apparatus when a trick doesn't go according to plan.

If this safety net malfunctions―as famously happened to US gymnast Simone Biles when she got the “twisties” during the 2020 Tokyo Olympics―it can cause these athletes to lose control of their bodies in midair, with potentially deadly consequences.

Focus and attention

Athletes must be able to appropriately divide their attention and dynamically switch between different ways of thinking. For example, during a match, a soccer player who is dribbling the ball one way may need to quickly switch direction if approached by a player from the opposing team.

The cognitive skills needed to switch your attention also extend to tasks in daily life, such as listening to a podcast while cleaning the house. A 2022 study in the International Journal of Sport and Exercise Psychology provided evidence that athletes are much better at this than nonathletes are.

Notably, athletes trained in team sports that require aerobic or high-intensity interval training had particularly enhanced skills in this area. They stood out for their cognitive flexibility and their ability to appropriately allocate attention, researchers found.

At this point, it is unknown why athletic training influences cognition this way, said Art Kramer, co-author of the International Journal of Sport and Exercise Psychology study and director of the Center for Cognitive and Brain Health at Northeastern University in Boston. To find out, you would need to do a long-term study or a randomised controlled trial in which some kids are put into athletic training while others are not and then monitor them over time. But such a study would be unethical because some kids would be completely denied access to sports, he said.

Resistance to ageing in the brain

The cognitive benefits of athletic training may also extend throughout life. Perhaps no one exemplified this better than the late Canadian track-and-field athlete Olga Kotelko, who held more than 30 world records.

Before she died in 2014 at age 95, Kramer and colleagues studied her brain in the lab.

As we age, the 'white matter'―the connections between neurons in different regions of the brain―deteriorates. However, the team found that Olga―despite being in her mid-90s at the time―had strikingly intact white matter, comparable to that of less-active women who were more than three decades younger.

Olga was also quicker at responding to cognitive tasks than other nonagenarians who were tested in a separate, independent study, and she had better memory than them, the team found.

Of course, general conclusions cannot be drawn from one athlete. However, as the team said, there is “only one Olga”. For this reason, she afforded scientists a unique glimpse into the long-term impacts of athletic training on the brain.

It is important to note though that not every elite-level sport is associated with people surviving into old age, or staying sharp into their 90s like Olga did. Scientists are still figuring out which sports bring about such benefits and which don't.

Training of the next generation

Looking forward, encouraging brain training in athletes from an early age may lead to even more sporting gains.

“We're at a point with training athletes, in particular, where the human body can't really go much further, but there's so much more we can actually do with cognition,” said Kylie Steel, a sports scientist at Western Sydney University in Australia.

In an article in The Conversation, Steel and colleagues argued that coaches should focus more on training athletes' cognitive abilities, such as their memory and decision-making skills. This is especially important during the earlier years of life, when the brain is more malleable, they posited.

In a ball sport like soccer, this training could involve asking players to use their nondominant foot to kick the ball. “If we can try and encourage a lot more training associated with that [cognitive enhancement]―particularly in the junior years―by the time they get to those later years, tactically, they'll be more skilled,” Steel proposed.

dental-health-tips-routine-oral-hygiene-tooth-care-myths

Sat Aug 31 13:11:27 IST 2024

Understanding oral health: This is a state of wellbeing of teeth, gums and other structures within our oral cavity or mouth that help in proper eating, speaking and aesthetics. While dental health just denotes healthy teeth and gums, overall state of oral health encompasses maintenance of oral cavity, its structures, their functions and also facial features and aesthetics. So good oral health is when all the components of the oral cavity like teeth, gums, periodontium (tissues that support and surround the teeth) are functioning properly and in harmony with each other, supporting not just eating but also helping in digestion and maintaining proper alignment of facial features.

Proper brushing: Brush for two minutes with adequate (not excessive) pressure; just enough to remove the plaque build-up. Rigorous brushing harms teeth in the long run. Hold the brush at a 45 degree angle, move it in small circular motions and cover all surfaces. Wait for 30-40 minutes after brushing before eating or drinking anything. Some people tend to brush after every meal but do that only if you have had garlic/onion or anything that gives you bad breath. Else brushing twice a day is fine.

Manual or electronic brushes? Both are fine as long as brushing technique and pressure are proper.

What about mouthwash? It is not a necessity. It does complement your brushing, but, if your oral hygiene is good, skip it unless advised by your dentist.

The neglect of flossing: Dental health overall is neglected in India. It is not just about flossing. People find it a waste of time that there should be an added step to their oral hygiene routine. But it is highly recommended as a brush cannot reach between teeth and cleaning that area is important too. Flossing is technique dependent, so one needs to learn to do it correctly.

White is not best: Normal teeth colour ranges from off-white to light yellowish. Sparkly, absolutely white teeth are not necessarily a sign of health. You can have healthy teeth even when your teeth appear a little yellow. Teeth colour tends to darken with age and habits.

Charcoal, bleach and other teeth ‘whiteners’: People tend to run after shiny, bright things. Charcoal is an added abrasive that harms the teeth in the long run. Similarly, DIY bleach can lead to severe sensitivity in teeth when done without supervision and without your dentist’s advice. If you want bleaching, go to your dentist.

Traditional cleaners like ‘neem’ twigs: They are still popular in many regions. Though neem offers many benefits, for oral hygiene, it is imperative to use a proper brush as neem twigs can lead to abrasion of the top layer of teeth which leads to sensitivity. Moreover, these do not provide complete cleaning of the dental structures.

Pay attention to the gums: Maintaining proper oral hygiene, use of a brush with soft bristles, massaging the gums with your fingers after brushing, getting professional cleaning and a visit to your dentist will maintain good gum health.

Clean that tongue too: People often neglect tongue cleaning. Bacteria and food particles stuck over the tongue cause inflammation and bad breath. Prolonged negligence causes glossitis (inflamed and swollen tongue). Avoid vigorous cleaning of tongue especially with metal tongue cleaners, which may damage the taste buds present over the surface of the tongue. Use a soft tongue cleaner or brushes which have a cleaning surface on the back of their heads. Clean the extra deposit over the tongue with mild pressure.

Most common teeth problems: Dental caries is decay in tooth structures because of prolonged exposure to bacteria. Over time, the hard structures of your teeth (enamel and dentin) are damaged, gradually exposing pulp or nerve of teeth. Gingivitis is the swelling of gums. Periodontal disease comprises of inflammation and infection of tooth, gums and the surrounding structure.

What you drink and eat matters: Daily intake of tea, coffee, cold drinks and acidic beverages―over time all tend to erode the top layer of the teeth leading to sensitivity. GERD (acid reflux from stomach) too leads to erosion of teeth. It is also a myth that only sugar is the enemy. Sticky food substances like mayonnaise (and acidic substances) also harm the teeth. Even breathing through the mouth impacts oral health.

Self-examining your teeth: Thorough examination needs a dentist but one can look for deposition, any discolouration, caries, any pain or unnatural growth, bad breath, cracked tooth, mal-alignment and jaw pain. If you observe any of these, get examined at once.

Common among Indians: Periodontitis is highly prevalent in the Indian population. Oral cancer, because of growing use of tobacco is one of the leading cancers in our country. Dental caries is rising among young adults, primarily because of poor eating habits. They also exhibit last molar eruption pain. Children display early childhood caries. They also display mal-aligned teeth and retained primary teeth. Adults and senior citizens show prevalence of gum problems, cavities along with mobile and missing teeth.

Common visible mis-aligned teeth problems: Forwardly placed upper front teeth (proclined anteriors); labially/buccally erupted maxillary (eg. canine buried in your jawbone towards the side of your lip or cheek); anterior deep bites/closed bites (overlap of upper and lower teeth); posterior cross bites (back teeth not touching when one bites down); irregular arrangements of upper and lower front teeth; gummy smile and spacing in between front teeth. All these can be fixed by orthodontic treatment, including metallic/ceramic braces or clear aligners.

Ban the myths: Hard brushing is good for teeth. Scaling weakens the teeth. Tooth extraction leads to loss of eyesight. Only sugar causes caries. Milk teeth are not important.

Simple tips: Brush twice daily for two minutes with adequate light pressure. Visit your dentist regularly, and at once if you notice anything unusual. Be vigilant to any changes in your oral cavity. Have the sweets you love as long as you follow a proper brushing routine.

Not just the teeth: Oral examination can diagnose multiple systemic diseases like diabetes, vitamin deficiencies and adenoid hypertrophy (chronic mouth breathing) among others. Oral health not just impacts teeth but also our jaw and its musculature, our digestion and aesthetics as well. Diabetes causes weakened periodontal health and delayed wound healing and it also causes ketone (metallic) breath.

Not all of us will all lose our teeth: Many aged people have a full set of healthy teeth. You just need to take proper care of your teeth always and see your dentist. Yes, normal wear and tear happens like it does for all body parts.

More on the link with diet: Diet is an important factor as whatever we consume first needs to go through our mouth and teeth. So if you are having sugary, acidic food regularly, it not just leads to various health problems but also, over time, weakens the dental structures. It works vice versa, too. If you have weak/decayed/missing/mal-aligned teeth you can't chew or eat properly and that affects the quality of the food you intake and your overall health.

What’s new in the field? Use of Invisalign (clear aligners) to correct maligned teeth. Use of lasers for root canal treatment and gingival surgeries, TMJ pain (temporomandibular: the joint that connects the lower jaw to the skull), and for dental bleaching. Cone beam computed tomography (CBCT―a kind of medical imaging technique) to explore for any abnormality in jaw, bones and teeth. Use of Digital DC X-ray which emit far less radiation and of intraoral scanners to scan hard and soft tissues of the oral cavity.

mpox-causes-symptoms-treatment

Sun Sep 08 20:45:22 IST 2024

Interview/ Dr Anup R. Warrier, senior consultant (infectious disease), Aster Medcity, Kochi

The surge in mpox cases following the outbreak in Africa is unprecedented: 18,000 cases and more than 600 deaths have been reported this year. The World Health Organization has declared it a public health emergency of international concern (PHEIC).

The new virus strain, Clade Ib, is more virulent and infectious than the earlier ones. This mutated strain is causing severe illnesses and an increase in deaths. Outside Africa, cases have been reported in Sweden and Pakistan too. As the world is yet to fully recover from the Covid pandemic, Dr Anup R. Warrier, senior consultant (infectious disease), Aster Medcity, Kochi, explains whether mpox poses a threat. Excerpts from an interview:

What exactly is mpox disease and how did it originate?

The monkeypox virus was discovered in 1958, and the first human case reported in 1970. It is endemic to west Africa, where the consumption of bush-meat, including that from rodents and monkeys, contributed to its rise. However, human-to-human transmission was limited at that time. The virus primarily spread in close quarters, including through sexual contact, and had a mortality rate of only 1 per cent.

So what has changed now?

The Clade II virus that previously caused illness was less severe, but had led to a global outbreak in 2022-23, with mpox cases reported outside of Africa, including in India. Over time, the virus mutated into a more serious strain―Clade Ib―with a higher rate of human-to-human transmission. Recent research has discovered that this strain spreads through the respiratory route, with over 70 per cent of infections occurring in children. The new strain has also caused more deaths; the mortality rate has increased to 10 per cent. Another worrying factor is that this will likely lead to another mutation in the virus.

The WHO has declared the outbreak a PHEIC. What does this mean?

By declaring mpox a public emergency, the WHO has called on countries to take proactive measures, prepare to handle potential cases. Governments should plan for isolation facilities, enhance laboratory capacity, ensure preparedness of healthcare workers, raise community awareness, establish hospital SOPs, and develop a vaccination strategy. At this stage, encouraging public alignment with vaccination efforts is also crucial.

What are the health complications caused by the disease?

Mpox severely affects vulnerable and immunocompromised people. In severe cases, it can lead to secondary bacterial infections, encephalitis, pneumonia and keratitis (which causes blindness). All these can lead to deaths.

What are the symptoms of the disease that we need to watch out for?

The virus has an incubation period of three days to three weeks, with symptoms appearing within 21 days of infection. Unlike influenza, mpox cases are characterised by lymph node enlargement.

Next is the rash stage and it progresses through several stages: macules (red spots), papules (pimple-like), vesicles (filled with clear fluid), and pustules (containing opaque fluid). Skin rashes and fluid typically persist for two to four weeks.

What helps theinfection spread faster?

Since people are travelling across the world, such diseases can spread at a fast rate. Between 2018 and 2021, eight people were diagnosed with Clade II after travelling from Nigeria to the UK, Singapore, Israel and the US.

During the pre-rash/ symptomatic phase, the spread is relatively faster. Also, it spreads through respiratory route as well as fomites (i.e, utensils, clothes, furniture, environment contamination). However, when you compare with Covid, the spread is less severe as it is not airborne, but the major concern is that we are not sure if another mutation would change its traits.

What are the steps required to prevent an outbreak in India?

In terms of symptoms, checking of the lymph nodes for enlargement is the start. Travel and contact history of the person should be tracked to contain the spread. If anyone is arriving from Africa or has come in contact with an infected person, an isolation period should be mandatory. Rapid testing and further treatment would come in the later stages.

What methods would you advise to keep the virus in check?

There is no specific treatment. Medicines originally developed to treat smallpox are used for mpox treatment as well. There is vaccination. Mpox vaccination comes in two doses. It is about 78 per cent effective for two years. Those who have taken the smallpox vaccine can also prevent the spread of the infection to an extent.

Is there a likelihood of another pandemic?

There is a possibility at this stage. However, it will not be as severe as Covid. Compared to Covid or measles, the transmission rate for mpox is low. In the case of measles and Covid, the transmission rate is 80 per cent, while in mpox it is 20 per cent. The steps we followed during the Covid pandemic will come in handy if such a situation arises in India.

brain-waste-clearance-mechanism-glymphatic-system

Sat Aug 31 13:02:38 IST 2024

Your brain is similar to your room. If you have a cluttered room, it can become a breeding ground for disease, chaos and inefficiency. Similarly, a ‘dirty brain’ can cause trouble. Our brain has an ingenious system to clear out dirt and harmful waste. However, if that system becomes impaired for some reason, it may lead to dirty-brain diseases―such as Alzheimer’s and Parkinson’s. These diseases are characterised by the brain’s inability to effectively clear harmful waste products, primarily due to the decline of the glymphatic system, a waste removal mechanism.

Ageing is an important factor in the development of dirty-brain diseases, as it can affect the waste-clearing process. Now, a new study suggests that it may be possible in the future to reverse this age-related impairment and restore the brain’s waste-clearing mechanism.

The study was done by researchers at the Hajim School of Engineering and Applied Sciences at Rochester, New York, and the University of Rochester’s Medical Center. The researchers focused on the glymphatic system, which utilises cerebrospinal fluid to flush out excess proteins generated by neurons and other brain cells during normal activity. As individuals age, the efficiency of this system diminishes, leading to the accumulation of toxic proteins associated with various neurological disorders.

Once laden with protein waste, cerebrospinal fluid in the skull must travel to the lymphatic system and eventually reach the kidneys for processing. Advanced imaging and particle-tracking techniques have revealed the route by way of the cervical lymph vessels in the neck through which half the dirty cerebrospinal fluid exits the brain. Unlike the cardiovascular system, which has the heart as its sole pump, fluid in the lymphatic system is transported by a network of tiny pumps. These microscopic pumps, called lymphangions, have valves to prevent backflow and are strung together to form lymph vessels.

The researchers observed that in older mice, the frequency of contractions of this system decreased and valves failed, slowing the flow of dirty cerebrospinal fluid out of the brain by 63 per cent compared to younger mice.

The researchers applied prostaglandin F2α, a drug already being used clinically, to the cervical lymph vessels in older mice. It was then observed that the frequency of contractions and the flow of dirty cerebrospinal fluid from the brain both increased, returning to a level of efficiency found in younger mice. Prostaglandin F2α is a hormone-like compound commonly used medically to induce labour and known to aid smooth muscle contraction. This breakthrough offers a potential new treatment strategy for neurodegenerative diseases.

a-new-approach-to-treating-parkinsons-plus-syndrome-a-first-in-india

Sat Jul 27 15:36:58 IST 2024

Mary (name changed), a 65-year-old from Europe, arrived in Bengaluru in a wheelchair, grappling with the debilitating symptoms of Parkinson's Plus Syndrome (PPS). Having endured years of fruitless medical consultations across France, England and Africa, she found herself at Fortis Hospital Bannerghatta Road, where she was diagnosed and given relief through an innovative treatment.

PPS, a variant of Parkinson's disease, presents a unique set of challenges including early-onset dementia, hallucinations and balance issues, making traditional medication ineffective. Mary's case was particularly severe, marked by a loss of bladder control, speech impediment, and a near-complete loss of mobility. Traditional treatment avenues exhausted, the medical team swiftly formulated a novel approach―high cervical spinal cord stimulation.

“While Parkinson's often responds to medication like Levodopa and deep-brain stimulation surgery, PPS presents a more complex scenario,” said Dr Guruprasad Hosurkar, additional director of neurology at the hospital. “Unlike PD, where brain degeneration is localised, PPS affects a broader range of brain functions. PPS patients develop balance issues and gait freezing early on. In PD, a patient may develop similar symptoms 10 to 15 years after the onset of the disease. If tremors are seen in PD patients, the atypical Parkinsonism patients experience difficulty in swallowing, speech and coordination, and clumsiness. They cannot do regular work like eating or standing.”

Conventional DBS surgery could have potentially exacerbated Mary's condition. The doctors went through literature and found that some centres had tried brain stem stimulation and lower spinal cord stimulation.

“We selected the higher cervical cord stimulation, where we put a lead over the surface of the spinal cord for stimulation,” said Hosurkar. “This would modulate the networks in the spinal cord and improve her condition or restore some of the normal functions like speech, bladder control and movement. She improved and started sleeping through the night without disturbance. We put a lead covering 70 per cent of the spinal cord (from C3 to C8 vertebrae) and used an external battery to stimulate the spinal cord. After adjusting the parameters, we saw nearly 40 per cent improvement in her working abilities.”

Dr Raghuram G., additional director, neurosurgery, at the hospital said, “Our approach involved an initial trial surgery utilising an external pacemaker. This step was crucial as it allowed us to closely monitor the patient's response to the stimulation. Following this, we observed promising results, including improved mobility and reduced symptoms. Encouraged by these outcomes, we proceeded with the spinal cord stimulation surgery, which involved precise placement of electrodes along the spinal cord to modulate neural activity and alleviate symptoms. Spinal cord surgeries are different because they involve placement of an electrode on the spinal cord chosen for a particular condition. It is an epidural (space around the spinal nerves) electrode and is not put within the spinal cord. Unlike the deep brain stimulation electrode, which is placed within the brain.”

The procedure, done in a few centres in the US and China, was carried out in India for the first time. The internal battery lasts seven to eight years. The small devices that conduct electricity are placed near the spinal cord.

“The patient who had come in with the assistance of two people for treatment could walk a few steps independently after the treatment. The stiffness in the limbs reduced, speech became clear and she slept peacefully at night after many years. The new procedure has a window of 10 days before which you can remove the lead and the external battery if you don't see some predictive value of improvement. The cost of the lead is around 02 lakh and the battery would cost 015 lakh,” said Dr Hosurkar, adding that the patient was discharged after ten days.

A patient programmer app helps in the follow-up treatment as it sets parameters for stimulation in the device. If the response to the earlier limit of stimulation is lower, they can increase it. Video consultations are held in follow-up sessions.

With the increase in life expectancy, there are more Parkinson's patients―one in every hundred aged 80-plus. And for every 10 cases of Parkinson's, two to three patients have PPS, said doctors.

The spinal cord stimulation can be used to treat Parkinson's, too, as the patient develops similar complications and the gait might not improve even after DBS. However, it is not advisable if the patient is above 70 and has co-morbidities.

“The achievement represents a significant milestone in the field of neurosurgery,” said Akshay Oleti, business head, Fortis Hospital Bengaluru, “and offers hope to individuals battling this challenging condition.”

low-testosterone-is-as-much-a-taboo-for-men-as-menopause-has-been-for-women

Sat Jul 27 15:18:13 IST 2024

Low testosterone, or Testosterone Deficiency (TD), is experienced by two out of 100 men, and while it becomes increasingly common with age, ageing isn’t the only reason. Its impact can be upsetting, leaving men feeling unhappy and unwell. The good news is that it’s an entirely treatable problem. The difficulty can lie in identifying it.

While most people imagine low testosterone to be purely associated with libido and sex, there are actually a whole range of other symptoms that may indicate a testosterone problem, and it’s often spouses and partners who are best placed to spot them.

SYMPTOMS

Men with low testosterone levels may feel excessive tiredness, even after sleep. A lowering of testosterone can produce a range of physical and psychological symptoms in them. Many of these can be easily mistaken for other conditions, or simply the bad temper of age. Knowing what to look out for can help you to get your partner the treatment they need. Dr David Edwards, general practitioner and specialist in men’s and women’s sexual health and contributor to TRTed, shares the key signs and symptoms to be aware of:

1 He’s tired all the time

Whether it’s nodding off on the couch every evening, spending more time at home just relaxing, not wanting to get out of bed in the morning despite a full night’s sleep, or putting off tasks or events that he would usually enjoy, he may have a testosterone imbalance.

2 He’s more irritable or depressed than usual

Testosterone affects emotions and too little can lead to depression. Suppose your partner is snappish or moody for no apparent reason. In the case that he’s not stressed or obviously ill, there are no family or other personal problems—there’s a chance that it might be low testosterone pulling his emotions all over the place.

3 He’s putting on weight

A lot of people gain weight as they age, but if your partner has developed a recent 'spare tyre' around his middle and he’s not noticeably changed his diet or exercise routine, it can be an indication that his testosterone has fallen.

4 His sex drive has dropped off or he’s having trouble maintaining an erection

This is the sign that most people know to look for when it comes to low testosterone, but it can be interpreted in other ways. If your partner isn’t initiating intimacy as often as he once was, it’s easy to imagine that he’s losing interest in you. If he’s failing to maintain an erection, he may laugh it off as too much beer. But if these things are occurring regularly and there are no other reasons—like injury, stress or illness—there could be hormonal issues at play.

5 He’s not as strong as he once was

Testosterone directly impacts the building and maintaining of muscle. When testosterone levels fall, muscle mass falls, too, typically reverting to fat. And this can impact a man’s strength, his ability to lift, carry, and even exercise.

6 He’s finding it hard to concentrate

Testosterone has also been linked to cognitive function, meaning concentration becomes harder when it falls. And this can come into play at work as well as at home. If he’s complaining about not finishing his projects on time, the boss breathing down his neck at work, or he doesn’t seem to be paying attention at home, testosterone could be playing a part.

7 He’s lost his oomph and other symptoms

Although it’s really not an appropriate term, there are a lot of reasons why low testosterone is often jokingly referred to as the 'male menopause'. In some cases, men can experience a range of similar symptoms, including night sweats, hot flushes, sensitive breasts and anaemia. Shrinking testicles can also occur. It’s worth paying attention to how the man is sleeping, feeling, and whether he has any sensitivities.

THE HEALTH EFFECTS

If a man has biochemically low levels of testosterone, he can experience a range of health issues. While some of them are minor, such as tiredness and a loss of energy, others can be more serious, such as depression, diminished bone and muscle strength, as well as low red blood cell count. In fact, research has shown that men with TD have a greater chance of dying younger than men with normal levels.

Testosterone levels and symptoms can improve with testosterone treatment gradually over many months. Interestingly, the first symptoms to improve are often the sexual symptoms such as erections, libido and early morning erections.

Men with type 2 diabetes are more likely to suffer from TD—40 per cent of type 2 diabetics (T2D) have low or borderline testosterone. Those with T2D must ask for a testosterone blood test to be carried out in annual blood tests.

Interestingly, other research has shown that men with TD and T2D can put their diabetes into remission with testosterone treatment. They see an improvement in their diabetic, cholesterol and fat blood levels. Furthermore, their weight goes down, blood pressure reduces and abdominal circumference improves year on year.

But it’s not an overnight fix, so don’t expect miracles straightaway.

How to talk to your partner about low testosterone

Unfortunately, one of the most common symptoms of low testosterone is irritability. And the last thing you probably want to do when you already feel like you’re walking on eggshells is to broach a difficult personal conversation. But the best approach is to offer honesty and sympathy. As soon as your partner realises that there’s a problem, he can start to do something about it.

Start by making a plan.

* Do some research to make sure that low testosterone could be the potential problem, and so that you can make a convincing argument. One that is factual rather than emotional.

* Think about how you’re going to open the conversation—ideally avoiding the "we need to talk" gambit—and what you’re going to cover.

* Choose a time when he’s relaxed, not distracted, has some free time, and is most likely to engage.

* Be open, honest, and sympathetic.

* Give him a chance to speak—and listen to what he has to say. He may have other explanations for his symptoms.

* Have a suggested action plan ready, so if he agrees and wants to seek treatment, you know what to do next.

TREATMENT

“In the first instance, your GP should always be the first point of contact for anyone who thinks they may have low testosterone,” says Dr Edwards. “While online services are available, to gain a true diagnosis, men need to have a medical history, physical examination, and blood work completed. Without this, misdiagnosis and missed diagnosis is common. Once a diagnosis has been made, your GP will be able to suggest the correct treatment or refer your partner to the relevant specialist.”

With the right treatment, men can recover health and their sense of vitality. It’s only when low testosterone is left untreated that wider problems develop.

bone-reconstructive-surgery-3d-bone-graft-printer-osseocraft

Sat Jul 27 15:12:57 IST 2024

In India, professions are often compartmentalised, with doctors and dentists primarily seen as healers. Defying this norm are Dr Adersh G.A., assistant professor at the department of surgery at PMS Dental College in Thiruvananthapuram, and Shivadhath R.P., a house surgeon at the same college. Their passion extends beyond traditional dentistry, to innovating and crafting novel medical solutions. Together, they have pioneered the world’s first clinical 3D bone graft printer, OsseoCraft, which is poised to revolutionise bone reconstructive surgery globally.

“Bone reconstruction for cases of bone loss typically involves the use of material like titanium and certain plastics. But they just provided support for existing bone or tissue, rather than fostering bone regeneration,” says Adersh, who co-founded the startup Pionomed Biogenix with Shivadhath. “Unlike these conventional options, the material we employ possesses unique properties that stimulate bone growth. It is osseo-conductive, which means it attracts bone formation. Consequently, when these particles are implanted in the body, bone forms around them, making this product unique.”

Moreover, this 3D-printed graft significantly reduces operative time compared to traditional methods like bone harvesting from other parts of the body. “For example, in cases of accidents or cancer surgeries resulting in bone loss, traditional approaches necessitate complex microvascular surgeries to transplant bone from elsewhere in the body,” says Adersh.

The duo utilises CT images of the patient to reconstruct the lost bone via 3D printing, directly implanting it into the patient’s body. The 3D printing process resembles that of a robotic system. “As we feed the reconstruction material into the machine, it is melted by an extruder heating to 200 to 300 degrees Celsius, deposited layer by layer according to the design programmed into the system,” says Adersh.

The reconstruction material contains hydroxyapatite molecules, a common component found in natural bone. “When implanted, the material attracts blood, facilitating the absorption of bone-forming factors. Subsequently, bone formation occurs around the implanted material,” he says.

Shivadhath highlights the cost-effectiveness of this printing technology compared to traditional titanium-based bone reconstruction materials. “A titanium graft can cost between Rs3,000 to Rs5,000 per graft, whereas we charge only Rs500 per graft,” he says. “Titanium, while strong, can sometimes weaken surrounding tissues due to its strength surpassing that of natural bone. Our material possesses strength comparable to natural bone, resulting in faster healing and improved surgical outcomes.”

Each graft produced by Pionomed Biogenix is customised to meet the unique requirements of individual patients, eliminating the need for on-table manipulations.

The concept behind the 3D printing-based bone graft was born during a contemplative phase Adersh had when he was an intern. “As a surgeon, I frequently encountered cases necessitating bone grafting or harvesting from alternative sites in the body. This process often extended surgeries by an additional five to six hours, and introduced complications such as donor site morbidity. Reflecting on these challenges, I sought a solution that could effectively substitute natural bone without resorting to metals or plastics. This journey led me to conceptualise a mechanism for producing grafts composed of a material engineered to emulate the properties and functionality of natural bone tissue,” he says.

Adersh’s father is a pioneering dental mechanic in Kerala known for crafting artificial teeth. “My father introduced me to dentistry,” he says. “Growing up in a family that owned a dental lab, I was exposed to various dental procedures from a young age, sparking my interest in the field.” Shivadhath says “fate” brought him to dentistry; he has a longstanding fascination with engineering as well. “In my second year [as undergraduate], I delved into research, eventually securing the first BDS student idea grant from the Kerala Startup Mission in 2022 for a gypsum recycling plant,” he says. “My innovation significantly reduced the cost of gypsum recycling. As I continued with my research, I crossed paths with Adersh, and our collaboration began.”

The award-winning duo’s 3D printer is now in use at PMS for reconstruction surgeries in the head and neck region. Additionally, the team has initiated discussions with several hospital chains and has forged partnerships with institutions like Apollo Hospitals, Hyderabad. Priced at Rs10.5 lakh, their printer offers a cost-effective solution compared to similar models abroad, which often integrate stem cell technology with 3D printing.

“We are aiming to provide an Internet of Things-based printer to hospitals, enabling remote planning and file creation, streamlining their workflow,” says Adersh. “For hospitals unable to invest in the printer, we offer the option to print grafts at PMS and deliver them.”

The entire journey, from conception to regulatory approval, spanned five years for this 3D printer featuring bioactive materials. The project received support from PMS’s engineering team and various other startups. Under Pionomed Biogenix, the duo is spearheading 12 innovative medical technology projects, including robotic exoskeletons, wheelchair-accessible dental chairs, and dental gypsum waste recycling plants. Additionally, they plan to venture into sustainable energy and establish a robotics centre, expanding their innovative endeavours. They are also chasing a world record―3D printing the largest artificial teeth using recycled plastics, leveraging their unique technology.

embrace-early-detection-methods-and-take-charge-of-your-hearts-health

Sat Jul 27 17:20:21 IST 2024

Over the past three to four years, we have witnessed a sudden spike in cardiac events, sometimes fatal. What is concerning is that the patients are getting younger. There has been a spate of healthy-looking people, in their 40s, succumbing to cardiac arrest. Accounting for about 27 per cent of deaths, heart disease has become a silent epidemic in India. Approximately six lakh individuals succumb to sudden cardiac death annually, a significant being under 50.

Atrial fibrillation (AFib), a common heart rhythm disorder, and hypertension contribute significantly to these statistics. AFib, characterised by irregular and rapid heartbeats, poses a heightened risk of complications such as stroke and heart failure. So, early detection and regular monitoring are paramount.

Despite efforts to raise awareness among the public and health care practitioners about hypertension, there remains a significant disparity in the number of people monitoring it. In a recent study from the Indian Council of Medical Research, 30 per cent of Indians aged 18-54 have never had their blood pressure (BP) checked.

Undetected and untreated hypertension elevates AFib risk threefold, and AFib increases stroke risk fivefold. This underlines the importance of monitoring Afib, along with hypertension, and can only be done when one measures ECG along with BP.

Patients, who consistently and accurately monitor their blood pressure fluctuations, can provide comprehensive data to health care providers, leading to better treatment strategies. While we have digital BP monitors available to track BP at home, home ECG monitoring solutions are the newer entrants and add more value. Unlike traditional methods that necessitate time-consuming visits to health care facilities, home ECG monitoring empowers individuals to monitor their heart’s health from the comfort of homes. There are advanced devices available now that enable patients to measure BP and electrocardiogram (ECG) readings and even detect AFib―all in one go, from home. It is important to note that AFib is not detected with just one or two measurements. A home monitoring device is crucial for identifying patterns and providing comprehensive data to health care providers.

These devices are user-friendly and clear to read. They look like standard home blood pressure monitors, with two electrodes on the sides, and can be connected to a smartphone app. Users need to place their thumb and index fingers on these electrodes to take their ECG. They can use the arm cuff for measuring blood pressure. The app not only displays your blood pressure and ECG readings but also tracks them over time. This data can be sent to your doctor in PDF format, providing them better insights into your health status.

The transition from reactive to proactive health care plays a pivotal role in preventing dire consequences linked with undetected heart conditions.

The writer is MD, OMRON Healthcare India.

how-a-teenage-pakistani-girl-found-hope-and-a-new-heart-in-india

Sat Jul 27 16:09:57 IST 2024

It began in 2009. Four-year-old Ayesha Rashan was gasping for air. Her panicked teachers called her mother, Sanober. She took her back home, hoping her daughter's condition would improve with rest. It did not. So, in the evening, Sanober rushed Ayesha to the doctor in her locality in Karachi. The doctor prescribed medication that eased Ayesha’s breathlessness.

Sanober, a single mother, was relieved and convinced herself that the episode was just a temporary health issue and that her little girl would be fine soon. After finishing the medicine's course, Ayesha went back to school. But, before long, she was back in the sick room. Another visit to the doctor followed. Medication provided temporary relief. Ayesha was back in school. And, then, back in the sick room. The relentless cycle repeated.

Slowly, Sanober realised that those grim calls from the school were becoming more frequent. And, she noticed that Ayesha's breathlessness seemed to be getting worse, despite multiple visits to the doctor. But she just did not know what to do to make things better for her daughter.

One day, when she was at the school in response to yet another call from the teachers, the school doctor suggested that she take Ayesha to a cardiologist. And, at long last, there was a proper diagnosis―cardiomyopathy (a disease of the heart muscle that makes it more difficult for the heart to pump blood to the rest of the body). However, according to Sanober, the cardiologist said there would be no treatment available in Pakistan. He prescribed medication for six months, but also warned Sanober that the condition was life threatening.

Sure enough, breathlessness came back to haunt Ayesha again and she had to stop going to school. Tired, and mostly breathless, she would lie on her bed as her two elder sisters shared stories from school. Sanober was already shattered. Her struggles grew as she could not keep up with the medical expenses. She provided for her girls with her earning from a job in a private company.

But despite the challenges and the feeling of powerlessness, Sanober continued her fight. If treatment was not available in Pakistan, she would cross the seven seas to save Ayesha. She scoured the internet for treatment options overseas and frequently visited the cardiologist seeking suggestions on a hospital in the west that could treat her daughter. The cardiologist and her relatives suggested hospitals in the US and the UK. But, they were not affordable. Sanober's search for a hospital lasted years and Ayesha's condition continued to deteriorate.

Finally, one of Sanober's relatives heard of a Pakistani patient who had got a heart transplant in India. It was done by Dr K.R. Balakrishnan, chairman of the Institute of Heart and Lung Transplant and Mechanical Circulatory Support in Chennai. After verifying what she could about Balakrishnan on the internet, Sanober got in touch. It had been 10 years since Ayesha first took ill. The 14-year-old was now fighting for her life, and failing.

Even after finding a doctor, the challenges continued. Getting a medical visa to India took more than six months. By the time Ayesha got to Balakrishnan in 2019, she was critically ill. “Her heart had almost stopped,” said Balakrishnan, who is also the chief of heart transplant at MGM Health Care, Chennai.

Balakrishnan and his team performed CPR and put her on ECMO (extracorporeal membrane oxygenation)―a machine that provides heart and lung support. After a few days, another artificial heart pump―a ventricular assist device―was implanted. Sanober had been unable to afford the device and had told Balakrishnan about her predicament. The doctors pooled money to help her. Ayesha was a candidate for a heart transplant, but once the artificial pump was in place, Sanober went back to Pakistan.

Ayesha took ill again. The right side of the heart became sick and the pump got infected. Ayesha developed a leak in the aortic valve. Before they could return to India, the Covid-19 lockdown was imposed. They did not have access to equipment needed to monitor patients with artificial heart pumps and there was no treatment in Pakistan, said Sanober. And, there was literally no way out. As the weeks stretched to months, Sanober and Ayesha managed the condition solely by following the advice Balakrishnan was giving them from Chennai.

By the time the lockdown passed, Ayesha's treatment options had got complicated. The doctor's decided that a heart transplant was her best bet. Getting a medical visa post-Covid was even more difficult than it was pre-Covid. Sanober's perseverance saw her through and, in June 2023, Ayesha returned to India with hopes of getting a new heart.

Sanober did not have the money for Ayesha's surgery and care. She travelled to India only on the word of Balakrishnan and his team of doctors that the money would not be an issue. “We had to take care of expenses,” said Balakrishnan. “The Aishwaryam Trust (a non-profit organisation) came forward generously to help.” Up next was the unnerving wait for a donor.

The transplant register was overflowing with requests from within India. The list of foreign nationals seeking organs is shared with the Union health ministry's National Organ and Tissue Transplant Organisation (NOTTO). An organ will only be allotted to a foreigner if there are no Indians on the waiting list. Ayesha had been on NOTTO's waiting list since 2019. It was only in January 2024 that the heart of a 69-year-old donor from Delhi was allotted to her.

“Luckily, she got the organ,” said Dr Suresh Rao, co-director at the Institute of Heart and Lung Transplant and Mechanical Circulatory Support. “For international patients, usually it is difficult to get an organ. In Ayesha’s case, there were no takers for a heart that was available in Delhi. We did a lot of logistics, including organising a chartered flight to bring it here on time.”

On January 31, 2024, the heart was airlifted from Delhi to Chennai. Balakrishnan and his team performed the transplant. However, as the donor was much older, the heart was too big for Ayesha. So, her chest was kept open for almost 10 days. She had a slow recovery. “She had to recover completely and the doctors wanted to monitor her health on a regular basis,” said Sanober. The mother and daughter stayed in Chennai and after five months in and out of the hospital, in June, Ayesha chose to go back to Pakistan. This time, she was not worrying about the future, but determined to pursue her dream of becoming a fashion designer.

Balakrishnan had spend his own money and also sourced funds for her recovery. When asked why this case was so close to his heart, he simply said: “She is so young; like my daughter. As a doctor, for me, every life matters.”

“The hospitality we got and the care Ayesha got in Chennai has given me a new life,” said Sanober. “My only request to Indian authorities is to give visas to patients who want to get treated in India. The political or bilateral relationship should never stand in the way.”

In a world divided by borders and beliefs, Ayesha’s heart now beats, somewhere in Karachi, with a resilient spirit.

direct-and-indirect-effects-of-inflammation-on-cognition

Sat Jul 27 15:33:31 IST 2024

If you are not kind to yourself in your 20s, a series of cognitive troubles could affect you in your 40s. Researchers from UC San Francisco found that higher inflammation in young adulthood may lead to reduced cognitive function in midlife. High levels of inflammation are associated with obesity, physical inactivity, stress and smoking. While the link between higher inflammation in adults and dementia is already well-established, this is the first time a connection has been made between inflammation in early adulthood and lower cognitive abilities in one's 40s.

Study author Amber Bahorik, from the UCSF department of psychiatry and behavioural sciences and the Weill Institute for Neurosciences, explained, “Long-term studies indicate that brain changes linked to Alzheimer’s disease and other dementias can evolve over decades. Our aim was to investigate whether health and lifestyle habits during early adulthood could impact cognitive abilities in midlife, potentially affecting the risk of dementia later in life.”

The study tracked 2,364 adults enrolled in the CARDIA study, which investigates factors in young adulthood that contribute to cardiovascular disease decades later. Participants, aged 18 to 30 upon entry, underwent testing four times over an 18-year span to measure the inflammatory marker C-reactive protein (CRP). Cognitive tests were administered five years after the final CRP measurement, when most participants were in their forties and fifties.

About half the participants were female. Among the participants, some 45 per cent had lower stable inflammation, while 16 per cent had moderate or increasing inflammation; 39 per cent had higher levels.

Researchers discovered that among participants, only 10 per cent with low inflammation performed poorly on tests of processing speed and memory, whereas 21 per cent and 19 per cent of those with moderate or higher inflammation levels, respectively, struggled on these tests.

Even after adjusting for factors such as age, physical activity, and total cholesterol, disparities persisted in processing speed. The researchers also observed differences in executive functioning, encompassing working memory, problem-solving, and impulse control.

The researchers discovered both direct and indirect effects of inflammation on cognition. They emphasised that increasing physical activity and quitting smoking are effective ways to reduce inflammation. However, while these steps may sound straightforward, many find them hard to implement.

a-symposium-on-traditional-trees-throws-light-on-india-s-ancient-knowledge

Sat Jun 29 16:04:28 IST 2024

Goa Governor P. S. Sreedharan Pillai inaugurated a day-long symposium on the traditional trees of India, titled 'Vriksha Vygnanika Sadassu', at the Raj Bhavan on April 21. In attendance were experts from various fields who presented papers on traditional trees that have been worshipped over the years in India. “Trees shelter thousands of creatures of all kinds―algae, fungi, insects, squirrels, birds, snakes and other reptiles, animals and humans,” Pillai told THE WEEK. “Every single part of a tree is useful, either as food, medicine, fuel, timber, or as source material for building various things. We must understand and appreciate their indispensable and invaluable existence on the planet.”

In their research paper titled, 'Indian traditional trees and their scientific relevance', researchers Amit Kumar Tiwari, Indrajeet Chaudhary and Alok Kumar Pandey mentioned how bel (Aegle marmelos) and rudraksha (seed of Elaeocarpus) were associated with Shiva, peepal tree with Vishnu, mango (Mangifera indica) with Hanuman and Ashoka tree with Kamadeva.

With the vedic civilisation and the knowledge of ayurveda, they added, society came to worship tulsi (Ocimum tenuiflorum), peepal (Ficus religiosa), banyan (Ficus benghalensis) and neem (Azadirachta indica) for their medical importance.

Dr Pradip Sarmokadam, member secretary, Goa State Biodiversity Board, spoke about the “traditional application of sacred flora of India in yajnas and associated rituals”. The enormous research carried out by vedic scholars and subsequent experts, he said, should be further institutionalised as it has integrated a conservation ethos into lifestyles for the betterment of humanity. “If disregarded and neglected, we would be deprived of a huge knowledge repository that is well documented and has verification methods,” he said.

The knowledge lies scattered and needs to be further strengthened by the integration of knowledge holders, he said. “I suggest we create conservatories of floral diversity of samidha (floral parts used as sacrificial offerings in yagnas) and make them available in its genuine form to establish ground-level successful models to depict floral diversity and its connect with Indian mythology,” he added. “We should create facilities that would provide dignity to the scholars and sustainability to those growing samidha and sacred flora. Livelihood opportunities in this sector should be explored. We should create dedicated libraries and research centres to simplify and ensure availability of vedic literature, plant-related knowledge and we should validate these by using modern scientific methods. People's Biodiversity Registers (PBRs), under the Biological Diversity Act, are under preparation and should capture traditional wisdom-based knowledge systems such as vedic rituals and associated wisdom, along with such knowledge and practices in other religions as an important basis that will lead to conservation of biodiversity.”

N.K. Sundareswaran, professor of Sanskrit at Calicut University, elaborated on the topic of 'Trees in the vedas'. “Here, the metaphor of the nest implies a huge tree, which is seen as a support of the ecosystem,” he said. “One may recall the explicit description of a similar huge tree in the Mahabharat: A huge tree flourishing, many living beings find an abode and habitat in it. When the tree is burnt, those living beings are rendered homeless. Of all the literary expressions of trees and forests in vedic literature, the aranyanisukt (the hymn of the thick woods) of the Rig Veda is the most noteworthy. It is a small hymn, but it carries much value from literary and ecological angles. The frightening solitude of the wild and thick woods is given a beautiful expression.... The deep forest is extolled as the Universal mother, not harming anybody (unless it is afflicted), and providing sweet and healthy food (fruits) in plenty.”

Sundareswaran talked about agriculture and how its practice is extolled in the Rig Veda. “We get references to the foodgrains that are cultivated and are utilised to prepare different food items and sacrificial offerings,” he said. “Grains such as wheat, barley, and rice, cereals and seeds such as mustard and sesame are mentioned as part of rituals.”

Retired professor Janarthanam addressed palm trees and disappearing traditions in south India, while other experts such as Rajendra Kerkar and Dr Sindhu A. spoke about the tradition of sacred trees in Goa, medicinal trees and the ethno-medicinal flora of sacred groves. In the same context, Pillai spoke about his project, 'Vaman Vriksha Kala', a monograph focusing on the specialised subject of bonsai. The name of the book means 'The art of miniature trees'. The prime intention of the book, he said, was to firmly establish the fact that bonsai is originally an Indian art, as against the widely held belief that it belongs to China and Japan. “In the book, I have provided sufficient evidence from ancient Sanskrit texts to establish this claim that the art of bonsai has its roots in India, and why our ancestors reduced trees to potted size,” he said. “After I took charge as governor in July 2021, I had the occasion to visit Partagali Mutt in Canacona taluka. There I saw this 1,000-year banyan tree. It was then that I decided that one day I would return to worship this great tree. About a year later, I began the Saimik Daiz Yatra (journey to learn about heritage trees of Goa) and that is when I learnt about 30 more heritage trees, all of them between 100 and 500 years, spread out across Goa. Some amazing trees I found were shidam, satvin, baobab, and more. These trees constitute an integral part of people's socio-cultural association with nature and environment.” His yatra resulted in the writing and publication of Heritage Trees of Goa, which was released by the West Bengal Governor C.V. Ananda Bose last year.

popular-weight-loss-miracles-that-will-not-work-in-the-long-term

Sat Jun 29 16:01:57 IST 2024

Weight loss miracle cures are everywhere. Every day a new study, product or trend promises a magic bullet that will banish fat and give you a svelte figure with next to no effort.

Fad diets date back to the 19th century, but the advent of Instagram and TikTok has led to a mass proliferation of get-slim-quick techniques from detoxifying teas to volume-eating diets.

“Self-esteem is at an all-time low, and not trusting yourself is a key feature of people who pursue quick-fix solutions,” says Dr Jo Perkins, a chartered psychologist. “You’ve tried it on your own, haven’t succeeded, so you lean on a magic solution.”

This is human nature, says Dr Perkins. “We’re hard-wired to want to expend the least energy on the best result―a hungry monkey reaches for the nearest banana rather than the one at the top of the tree―it’s the same with weight loss,” she says.

The trouble is that “we live in an instant gratification culture where it’s easier to order a weight loss product online than it is to stop and think about it and why we even want it,” adds Dr Perkins. “There’s a perceived credibility that comes with being the first to discover something. It’s a double-whammy inducing us towards fads.”

However, in the long term, these techniques are tricky to stick to. Here are a few popular ‘weight-loss miracles’ and, crucially, why they won’t work in the long term:

DETOX TEAS

Promoted as ‘flat tummy teas’, these products are presented as a natural way to reduce water retention, cleanse the digestive system, and ultimately lose weight. A common denominator in these products is often senna, a natural laxative.

One can get a flatter stomach on a detox tea diet because the laxative effect causes them to excrete food before it is fully digested. They often also contain diuretics which cause drinkers to pass fluid more regularly, resulting in a temporarily flatter stomach. However, consuming laxatives and diuretics can cause stomach cramps and diarrhoea. As soon as a person stops consuming them, any perceived weight loss will be reversed.

BEVERLY HILLS DIET

Created by the author Judy Mazel in 1981, this is an extreme diet that claims to promote weight loss through specific food combinations. The Beverly Hills diet is based on the idea that the order and combinations in which foods are eaten causes weight gain. Mazel claimed that eating foods in the wrong order could stop some foods from being digested, causing fat build-up.

The diet divides foods into four groups: carbohydrates, proteins, fruits, and fats. Fruit, even different types of fruit, must always be eaten alone. If a different type of food is eaten, such as a protein, the dieter must wait until the next day to eat fruit again. Protein and carbohydrates cannot be eaten together.

You won’t be surprised to hear that experts are very sceptical about whether food combining actually works. You will probably lose weight initially because of the low calorie intake, but it’s very complicated to follow and following such a restrictive diet for an extended period of time could result in nutritional deficiencies. Best to confine this one to the history books.

VAGUS NERVE STIMULATION

Currently being trialled by scientists at Moscow State University, this technique involves clipping electrodes to a part of the ear which contains a branch of the vagus nerve, which stimulates appetite. So the thinking is that an electrical current passed through it could tell the brain that the stomach is full, curbing a person’s appetite.

Vagus nerve stimulation has already been heralded as a miracle cure for epilepsy and depression, and animal trials have suggested that it may work for weight loss. Users in the Russian trial will wear the clips on both ears, connected to a battery-powered generator which will provide 10 minutes of stimulation per day.

However, it is not clear whether it will work, let alone its long-term efficacy. “Ultimately, the only way to make weight loss work is if you can shift your habits to move your weight anchor down,” says Dr Andrew Jenkinson, a bariatric surgeon and author of How To Eat (And Still Lose Weight).

CARNIVORE DIET

This involves eating only meat. The idea is that protein has a ‘high thermic effect’, meaning the body has to burn more calories to digest it. Additionally, since protein is used for building muscle, the body quickly increases in muscle size, raising its basal metabolic rate―the calories are burned simply by staying alive.

Weight-loss will happen on this diet because of calorie restriction. The other supposed benefits are questionable, according to experts. “You can’t magically take all of your protein in one meal and turn that excess into muscle,” says the award-winning dietitian Priya Tew. “It will convert it into glucose and your body will either use it or store it.”

CABBAGE SOUP DIET

A popular strategy which sees people eating nothing but cabbage soup for a week, stripping out any other aspect of their diet.

It will work temporarily, because of calorie restrictions. However, like all calorie-restricting diets, it’s “prone to short-term success, long-term failure―as soon as you come off it, your brain will want to get back to its weight set point,” says Dr Jenkinson.

VOLUME EATING

Based on the idea that food loses nutrients when cooked, this diet sees people eating only raw, plant-based foods that are high in water and fibre so you feel full. It is popular on TikTok as the rebranded concept of “volume eating” where dieters eat big helpings of low-calorie foods like spinach to stay full, avoiding carbohydrates.

The diet can help followers avoid the worst excesses of modern junk food. “The western diet is high in ultra-processed foods made with refined sugar and carbohydrates which causes our insulin to become high,” Dr Jenkinson explains. “This blocks your natural weight regulation hormone, leptin. Your brain then thinks you’re running on empty and tells you to keep eating.” In short, by eating raw food and avoiding ultra-processed foods, you will stop overeating.

However, it pays to be careful. A 1999 study by German scientists looking into over 500 people on the diet over three years found that “since many raw food dieters were underweight and exhibited amenorrhea [loss of periods], a very strict raw food diet cannot be recommended on a long-term basis”.

PERSONALISED DIETS

This involves getting analysis of blood or stool samples to create a hyper-personalised diet based on gut bacteria or DNA. The thinking goes that a person can optimise their intake to foods they are best able to digest.

“People love the idea that something is just for them, that you’re getting something no one else has understood,” says Dr Jenkinson. “But it’s based on pseudoscience. There’s no evidence that you can tailor a diet to your gut microbiome or that it will have any effect. Eventually all these diets end with advising you to eat normally, but avoid ultra-processed foods, which works but isn’t personal.”

JUICE CLEANSE

Popularised by catwalk models and the Kardashians alike, juice diets were all the rage several years ago. The diet is essentially a simple calorie-restriction―by cutting out normal solid foods, you limit the amount you are eating, putting you into a calorie deficit.

Work has been put into making sure low-calorie meal replacement shakes have the right nutrients and vitamins in them, so a reputable juice cleanse diet is usually nutritionally complete. However, according to Emer Delaney, a spokeswoman for the British Dietetic Association, juice cleanses are inherently unsustainable: “People might be able to follow them for a couple of weeks, but it’s not addressing your behaviour around food. They’re not sustainable. People can’t just go on drinking shakes for the rest of their lives.”

In short, once you come off the diet, the weight will go back on.

THE REAL SECRET TO LASTING WEIGHT-LOSS

Lasting weight-loss happens by altering the brain’s weight anchor. “The brain is in control of your weight, not you,” Dr Jenkinson explains. “It is like saying you can control your breathing by holding your breath; the brain takes back over. It will drag you to the weight it wants you to be. The only way to lose weight sustainably is to understand why your weight anchor is set at such a level.”

Reducing the brain’s weight anchor is a gradual process, about adjusting habits and lifestyle in the long-term. “You can reduce it by changing not just the type of food you’re eating―cutting out those refined carbohydrates and sugars―but also by reducing your stress, and getting better sleep,” says Dr Jenkinson. “Forming healthy habits requires repetition. The more a habit is performed the more the neurological pathway will become ingrained into your brain. That’s when the weight anchor will move.”

how-to-take-care-of-your-skin-explained-by-dr-sunil-sanghi

Sat Jun 29 15:43:34 IST 2024

Dr Sunil Sanghi, 57, senior consultant, dermatology, studied medicine at the Armed Forces Medical College in Pune. A fellow of the American Association of Dermatology, he enjoys playing lawn tennis and table tennis.

BEYOND ‘JUST’ SKIN: The condition of our skin is indicative of overall health. Thus skin which is yellow, blotchy or sallow is indicative of trouble elsewhere. Many diseases like hepatitis first manifest as itching or rashes on the skin. The quest for beauty has shone an even more intense spotlight on it.

THE LOOK OF HEALTH: A healthy skin reflects a healthy body. Such skin is smooth, warm, hydrated and has an even tone. There are five primary skin types: oily, dry, normal, combination and sensitive. Each skin type has its own sets of unique characteristics and needs that can affect the look and feel of your complexion. A balance of oil and moisture leads to blemish-free and smooth skin with fine pores. While genes play a major role in skin type, care routine, sunlight, temperature, stress, hormones, smoking, alcohol and exercise also affect it.

SIGNS THAT ALL IS NOT WELL: Flakes, cracks, rashes or visible hair and nail changes.

NORMAL CHANGE: The skin becomes thinner over time. There is loss of volume, especially in the cheeks, and bags form under the eyes. The effects of aging on the face are inevitable. These changes are normal with time. A newborn has delicate skin, teenagers have acne and the elderly have wrinkles. During pregnancy or rapid weight gain or loss, stretch marks can appear, which, despite the marketing hype, will not go. The marks result from the dermis―the middle layer of the skin―being stretched beyond its capacity and a resultant tear in its fibres.

WHAT IS UNACCEPTABLE: Severe acne leading to scars, rapid wrinkling and loss of volume or early progression of baldness.

INDIAN SKIN: Is much thicker than Caucasian skin, more prone to pigmentation and less prone to melanoma, the most dangerous type of skin cancer. The pigment in the skin is a boon.

MALE SKIN: Is approximately 20 per cent thicker than female skin, with more collagen (protein) and tightness. Men get more infections, but women have more pigmentary disorders, allergic diseases and hair problems. (The scalp is also skin.)

WHERE WE LIVE: Has little impact on our skin, though external factors like low temperature and high altitude cause changes. Low temperature, for instance, makes it harder for the skin to retain moisture, and makes it dry or itchy.

DIET: Which supports overall health also promotes good skin health. Nutritious food like fruits and vegetables, whole grain and healthy fats are good for the skin. Among the biggest misconceptions about diet is the role of food allergens in skin conditions and certain food practices associated with acne (eating sour foods, for example, does not enhance acne).

COMMON INDIAN SKIN PROBLEMS: Acne (clogging of hair follicles under the skin), eczema (inflammation of skin), psoriasis (build-up of cells causing scaly, itchy skin), fungal infections and hair disorders. Increasing pollution and temperature can trigger or worsen skin problems like rashes.

NO CURE FOR SKIN PROBLEMS? This is a misconception. With rapid advances in available therapies, most chronic skin conditions like psoriasis can be treated, ensuring a good quality of life. Both cure and continuous management work in various skin diseases just like in other chronic conditions like diabetes and hypertension.

WHY SO MANY STEROIDS? Dermatologists use steroids when needed. In such cases, benefits outweigh risks. The problem is self-medication, with over-the-counter prescriptions, especially topical steroids, being misused. The current epidemic of fungal infections is caused by the use of OTC medication, which addresses some obvious problem, but aggravates the real cause. For some conditions like anaphylaxis―a life threatening inflammation―steroids can be life-saving. The only skin regime you need: Good cleaning in the morning, followed by a toner (for removal of left-over dirt), moisturiser and sunscreen. In the night, use a cleanser, toner, retinoids and a moisturiser.

UNFAIR FAIRNESS: Allergic reactions are very common with the long-term use of pigmentation creams available over the counter. These lead to untreatable pigmentation and red, sensitive skin which persists lifelong.

EXPENSIVE IS NOT BEST: It is a myth that expensive creams can keep your skin young forever. The skin cream industry is huge, with significant reach on social media. But no skin cream can protect indefinitely against aging. It is better to visit a dermatologist once to understand the correct regimen for your skin, rather than spending money on products which are industry-driven.

SKIN FADS: Such as the recent Korean glass skin trend only promote misinformation for a ‘perceived’ perfect skin. No one should cultivate false hopes as there has been no scientific analysis of ingredients in products which promise the unbelievable.

NATURAL IS NOT ALWAYS SO: Products marketed as ‘natural’ are popular among consumers, but being natural does not mean they are effective or safe. Though comparatively expensive, they offer no additional benefit over cheaper medicated products. Aloe vera, for example, has been used for centuries for its health, beauty and medicinal properties. Though usually safe, it may cause allergic reactions in some people. This is true of all products.

LOOK OUT: For skin products that are healthy and good for the environment. Read and understand labels. Avoid parabens, for instance, which upset the skin's environment. Look for detailed information on the ingredients used. Organic products might not have lab-made substances, but colours and fragrances can also cause allergies. A sunscreen, for instance, is useless if it does not have zinc oxide, and can in fact have harmful ingredients, such as salicylate.

GOING TOO FAR: The influence of social media in promoting the use of expensive, anti-aging products at a young age.

MYTHS: Chocolate and oily food cause acne. Anti-bacterial soaps are good for skin. Natural and organic products are a better choice. All sun exposure is bad for skin. The higher the SPF the better the sunscreen.

SOME RED FLAGS: Fever with rash, painful swelling of skin, change in existing moles, loss of sensation or fluid-filled eruptions.

DO NOT SELF-MEDICATE: Any self-medication should be stopped immediately. Let me give two examples: We are currently going through an epidemic of fungal infections caused by OTC steroids. And self-medication with antibiotics is leading to significant antibiotic resistance.

TRAPS: The quest for ever-youthful skin leading to misuse of anti-aging creams. Hair oils that cure balding. Complete cure of psoriasis, vitiligo and eczema with alternative medicine. Quick-fix botox/bleach/skin peels.

TIPS: Have a balanced diet of adequate fruits, green leafy vegetables and healthy fat in the form of nuts and flax seeds. Follow a skin care regimen with cleanser, moisturiser and sunscreen. Carefully read what ingredients go into these products and use as per skin type, weather and external environment. Avoid stress and smoking, and exercise adequately. Essential oils can have some benefits, but which ones to be used should be individually determined. Such oils in heavy concentration can lead to skin irritation and worse.

flesh-eating-bacterial-infections-in-japan

Sat Jun 29 15:31:23 IST 2024

On June 18, Japan's National Institute of Infectious Diseases (NIID) reported a spike in the number of 'flesh-eating bacterial infections' in the country. As of June 9, the preliminary number of cases of Streptococcal Toxic Shock Syndrome (STSS) since the beginning of this year reached 1,019. A patient infected with Group A Streptococcus (GAS) bacteria could develop STSS, which can lead to flesh-eating bacterial infections, also known as necrotising fasciitis. This year has seen a significant increase in the spread of this rare and severe bacterial infection.

The mortality rate for necrotising fasciitis is 30 per cent. The bacteria can enter the body through surgical wounds, puncture wounds, burns, and minor cuts and scrapes. Early symptoms include redness, swelling, pain, blisters, fever, nausea, and vomiting. The infection progresses rapidly, leading to tissue death and causing severe pain, discolouration and peeling of the skin.

Flesh-eating bacterial infections have been documented for centuries, with some notable cases and outbreaks. Joseph Jones, a Confederate Army surgeon during the American Civil War, is credited with providing one of the first modern descriptions of necrotising fasciitis. He described it as “hospital gangrene”, a condition characterised by rapid and progressive soft tissue infection caused by Group A beta-hemolytic streptococcus, now recognised as necrotising fasciitis.

The term 'flesh-eating bacterial infections' is relatively new, coined and popularised by British tabloids towards the end of the 20th century to describe the necrotising infections caused by Group A Streptococci. Back then, the media suggested that epidemics of streptococcal infection were imminent. Scholars, however, note that such aggrandisement was unfounded. The moniker, though, helped in heightening public awareness of this infectious disease.

Diagnosing necrotising fasciitis involves a combination of physical examination, blood tests, tissue biopsy and imaging tests such as CT scans. Serious complications may lead to sepsis shock, organ failure, amputation and death. The infection can also cause severe scarring and long-term disability. Prompt and aggressive treatment is crucial, as necrotising fasciitis can rapidly progress and become life-threatening.

Treatment protocols include intravenous antibiotics, surgery to remove infected tissue, and other medications to manage complications such as sepsis and shock. Patients with underlying conditions like diabetes, immunosuppression, and chronic alcohol use are at higher risk and may require more aggressive management.

the-new-breed-of-wellness-gurus-from-fitness-experts-to-biohackers

Sat May 25 15:10:37 IST 2024

Wade Warren works as a product manager for a financial technology company. He is 28-years-old, bearded, bespectacled and lives in a small apartment in Brooklyn, New York. Every evening he puts on a special pair of goggles designed to block the short-wavelength, high-energy blue light that is emitted by his smartphone and laptop screens and, in so doing, he enhances his ability to fall asleep later. He sleeps on a more than Rs 2 lakh temperature-controlled mattress, which helps keep his core cool, which in turn stimulates melatonin, and, thus, ensures a better night’s rest. When he wakes, he will flick on the large 800W floodlight he keeps in a corner. By doing this, Warren suppresses his melatonin production and signals to his body that it is time to be awake. It also, he believes, improves his gut microbiome.

He adheres to a diet that is high in protein, low in carbohydrates. He also does a lot of other specific things to improve his “efficiency and effectiveness”. But you get the gist.

Warren had not thought to do any of this until one evening when he stumbled across a podcast hosted by Dr Andrew Huberman, a neuroscientist and professor at Stanford School of Medicine. He was drawn in by Huberman’s ability first to present complex scientific or biochemical concepts in a way that made sense, and then to provide listeners with advice about how to use this information, whether to do with fitness, mental health or behavioural change.

It was, essentially, self-help with science, and this pleased Warren. He became a devotee of Huberman, whose appeal is only enhanced by his incongruous appearance. With his beard, broad chest, meaty hands and piercing dark eyes, the 48-year-old Californian appears more like an Iron Age warlord than a neuroscientist. Today, the Huberman Lab advertises itself as the world’s most popular health podcast. He has more than six million Instagram followers, another five million on YouTube and several million across other platforms. Recent allegations made by a number of former partners that he is guilty of serial infidelity and controlling behaviour, which he denies, are unlikely to dent these numbers much.

Huberman is one of a number of popular online male personalities who are offering us the chance to become healthier, more efficient, better optimised human beings. If one of the dominant trends of the 2010s was “wellness” ― think Gwyneth Paltrow, Goop, crystals, healing energies, vague spiritualism and an endless list of alternative health practices made commodifiable and Instagrammable―then what we are seeing now is the emergence of something quite different. It is, ostensibly, a rationalist alternative―a Wellness 2.0―in which “science bros” offer advice founded, they insist, on research and data.

So there is Dr Cal Newport, a boyish 41-year-old computer science professor who writes popular books about focus and productivity and whose YouTube channel attracts millions of views via videos with titles such as ‘How to Reinvent Your Life in 4 Months and The Productivity System to Win at Anything’. There is Dr Mark Hyman, a 64-year-old silver fox who has developed “peganism” (a hybrid of the paleo and vegan diets), writes bestselling books called things like Young Forever: The Secrets to Living Your Longest, Healthiest Life, and who has three million Instagram followers. Dr Peter Attia, 51, who specialises in the medical science of longevity, counts Elon Musk as a fan and hosts his own podcast, which delves into questions such as the metabolic effects of fructose or the dangers of poor sleep. Dr David Sinclair, a professor of genetics at Harvard Medical School, also operates in the field of longevity. He advocates resveratrol, a natural supplement with antioxidant properties, and claims he has “reclaimed” his 20-year-old brain despite being 54.

These men, and others, all exist in the same online ecosystem. They cross-promote, appearing on each other’s podcasts and YouTube channels. If Wellness 1.0 was fundamentally feminine in tone, then Wellness 2.0 is distinctly masculine. It co-opts the stern, didactic language of the gym or boardroom. Science bros regularly use the word “protocols” rather than “routines” or “exercises” when telling their audiences what to do. Similarly, they will describe certain mindful practices as “tools” as if they were cordless drills or angle grinders. The name of a popular online radio show dedicated to fitness and wellbeing is, simply, ‘Mind Pump’.

Brad Stulberg writes bestselling books about performance and psychology and has a background in public health. He could pass for a science bro―he is trim, shaven-headed and bespectacled―but instead it was he who coined the term “broscience” five years ago, and he regards this world with a thoughtful curiosity as well as scepticism. “This is the more masculine version of the Paltrow self-care crystal stuff,” he says. And there’s no reason why the same psychological triggers that led wellness to become such an all-consuming thing for women can’t also apply to men. “We ultimately have the same human frailties and insecurities as women. Perhaps men were just an untapped market.”

The language of “efficiency” and “performance” permeates so much science bro rhetoric, and listening to these podcasts you’re often left with the sense that the main advantage of sleeping well and feeling energised, etc, is so that you can be a better employee. There is a reason you now see men posting their impressive daily routines on LinkedIn―their gym sessions, their moments of mindfulness, their healthy lunch recipes―and it’s because they believe it shows them to be better professionals.

Like Wade Warren, Michael Fields is another fan of Huberman. He is 27 and, having worked as a technical recruiter, he made the switch to become a fitness coach as well as an online trainer. Fields says that the vast majority of his clients are young professional men and that this simply reflects the kind of people who are most drawn to Wellness 2.0.

“I definitely feel like it’s way more targeted towards young men,” he says. “I think it’s because of that constant striving for status and purpose in life.”

And it is young men stuck in sedentary office jobs, Fields continues, who most often need the tools that science bros are selling. Looking at a screen for hours will make sleeping hard. Sitting down for hours will drain your vitality. What makes it worse is that the very fact of having a career that demands all this of you makes it all the more difficult to do something about it. “They have a hard time figuring out how to incorporate habits into their daily lives while working in a corporate job.” Fields says that his male, corporate clients often insist on knowing precisely why they should, say, take cold showers in the morning. So being able to tell them what someone like Huberman has said on the subject―stuff about dopamine and boosted alertness levels, etc,―is helpful. “He provides the scientific backing.”

Many of the men within this world trade on their scientific or medical qualifications. Others have achieved their profile via a willingness to go to extremes. Dave Asprey is a multimillionaire who made his money in Silicon Valley and as founder of the Bulletproof coffee and nutrition brand. He is 50 but has regularly made the claim that he will live to 180. Today, he says he wishes to revise that claim. “I think I’ve been shockingly conservative,” he says, frowning, before breaking into a bright white smile. “I think 180 is a boring, easily achievable goal.”

Asprey has built his platform as a podcaster and self-help author around claims like these. He believes that with the proper application of cutting-edge science it should be possible for all of us to live much, much longer. I’m 42, I tell him, and in decent health. How long does he think I can expect to live? “There is no reason you shouldn’t be able to live to at least 120 and be healthy the entire time,” he assures me.

Hang on, I say. How come you get to live to at least 180 but I only get 120? He smiles again and says that it’s only because he’s been “actively managing” his age for the past 25 years.

Asprey identifies as a “biohacker”. Having spent much of his twenties overweight, arthritic and struggling with “brain fog”, he has turned his life around via a slew of different treatments and protocols, from intermittent fasting to cryotherapy and various medical interventions. He has had more stem cell injections, he believes, “than anyone out there at this point”. He recently travelled to Mexico to undergo a form of gene therapy not permitted in the US and which “takes nine years off your measured age”. He takes 84 supplements a day and says he has had his “immune system taken out, amplified by thousands of times, and then reinjected to give myself a younger immune system”. He has, he continues, done a lot of neurofeedback therapy, which, in conjunction with taking a smart drug called modafinil, has provided him with what he describes as an “upgraded brain”.

Bryan Johnson is another tech millionaire. The 46-year-old is attempting to drive down his biological age through “Project Blueprint”, which, among many other things not dissimilar to what Asprey does, involves receiving blood transfusions from his teenage son. Johnson sleeps attached to a machine that measures the number of nocturnal erections.

Asprey approaches the question of longevity with a Silicon Valley mindset. “I take control of systems for a living,” he explains in a recent appearance on the Finding Mastery podcast. And human beings are, he continues brightly, simply “meat operating systems”.

There are, however, people within medicine who find this approach more than troubling. Last year, the British cardiologist and video blogger Rohin Francis wrote in the British Medical Journal about “the problem with Silicon Valley medicine”. He points out that the “move fast and break things” mindset that underpins so much of the tech world has the potential to cause much more harm than good. The human body, he writes, cannot be compared to a machine, while the demand for profitability sees claims become ever more spurious. “Waiting for evidence gained from clinical trials is often deemed too slow a process for venture capitalists hoping to see a return on their investments, so therapies are endorsed and sold based on theoretical or mechanistic evidence,” Francis writes. “These ‘breakthroughs’ are enthusiastically promoted at events more similar to the launch of a new Apple product than a medical innovation.”

Although not everybody wants or can afford to go as far as Asprey or Johnson, the desire for control drives so much of the science bros’ present success. “I think the story of wanting to live for ever, wanting to control the controllables and wanting to ‘science’ our way out of mortality is as old as time,” Brad Stulberg says. And many of the podcasts out there today are “preying on people’s desire for control and certainty in an inherently uncontrollable and uncertain world”.

What he means is, when you find yourself listening to a podcast that delves into the minutiae of exposing your body to cold water, avoiding particular types of cooking oils or the critical importance of tracking your sleep patterns, it can become easy to convince yourself that these things are all really important. In fact, you want them to be important because these are all things you can do and thus take control of. Thanks to health-tracking smartwatches and continuous glucose monitors, it is now possible to collate and crunch huge amounts of data about our bodies. “But just because something is measurable doesn’t mean it’s important,” Stulberg says. “Like, how did we get from ‘move your body for 30 minutes a day’ to ‘measure your erections for longevity’?”

He’s not saying that all science bros are manipulative or providing misinformation. But the truth is, we already have a pretty good sense of what people need to do to lead healthy, happy lives. “We have decades of good epidemiological data,” he says, and it shows that it’s important to avoid tobacco products, not to drink much alcohol, to exercise regularly, avoid becoming obese, maintain healthy social connections and, ideally, find meaningful work.

Stulberg points out that a lot of the podcasts are sponsored by supplement companies, and one YouTube video I watched, which featured Asprey comparing his deep-breathing techniques with the host’s, featured ads for dietary supplements as well as for a “personal analysis and data-driven wellness guide”. Also, people will always want to see content they perceive as comforting. If there is somebody telling you that if you buy the right medical treatments you can live to 120, then there’s a good chance a lot of us are going to click on it.

“I don’t necessarily think there’s always malintent,” Stulberg says. “Motivated reasoning is a very powerful drug, and we can convince ourselves of anything. If you can make a lot of money from a comforting belief and create a whole business model from it, then you can start to believe it yourself.”

Bryan Johnson, 46

“Don’t die” is this tech mogul’s goal. He made headlines around the world last year when he said he was trying to reverse his biological age to 18. He has had some success―he claims his heart is 37 years old. Johnson made his fortune when he sold his company, Braintree Venmo, to PayPal in 2013. Since then, he has spent more than 016 crore a year on cutting-edge “age-slowing” techniques developed by his team of doctors. His routine includes getting up at 4.30am, taking more than 100 pills, bathing in LED light and sitting on a high-intensity electromagnetic device to strengthen his pelvic floor, before going to bed at 8.30pm. Johnson calls himself “the world’s most measured human”.

Power list

By Georgina Roberts

Prof Valter Longo, 56

He wants to live to 120 and thinks the secret to longevity lies in a diet that tricks your body into thinking it’s fasting. Having spent 30 years researching ageing as professor of gerontology and biological sciences and director of the Longevity Institute at the University of Southern California, he used this experience to create the Fasting Mimicking Diet or FMD. It is a low-protein, plant-based diet that includes periods of fasting, which he says will make our cells regenerate and slow down ageing.

Wim Hof, 64

Once tried to scale Everest topless to demonstrate the health benefits of being extremely cold. The Dutch extreme athlete known as the Iceman has also broken records for climbing Mount Kilimanjaro wearing only shorts, swimming 66 metres beneath ice and running a half marathon above the Arctic Circle. He has built a business empire on his cold-water method and claims that it stimulates the autonomic nervous and immune systems, which strengthens physical and mental health.

Prof Andrew Huberman, 48

Fans of this Stanford academic call themselves “Huberman Husbands” and post videos on TikTok following the elaborate daily routine he recommends. #Huberman has 78.9 million views on the platform. He dishes out this advice on his hit podcast, Huberman Lab, which often ranks as the number one health podcast in the world, and on his Instagram page (6.2 million followers) and YouTube channel (5.2 million subscribers). He is associate professor of neurobiology and ophthalmology at Stanford University, which is said to have hung up an “Authorised Personnel Only” sign to deter fans from searching for his lab.

David Goggins, 49

More than 11 million people follow the endurance athlete and former Navy Seal on Instagram, where he shares fitness and motivational tips alongside shirtless selfies. He has completed more than 70 ultra-distance races and once held the Guinness World Record for the most pull-ups completed in under 24 hours (4,030 in 17 hours). In 2020 he invented the 4x4x48 fitness challenge, where you run four miles every four hours for 48 hours as if training for an ultra-marathon.

Ben Greenfield, 43

A former bodybuilder turned “biohacker”, Greenfield went on to develop an elaborate biohacking regime to strengthen the pelvic floor, ice baths, fasting, infrared light therapy, LSD microdosing and a 034 lakh machine that heals cells, he says. When he was 40, Greenfield said he had a biological age of nine.

Dr Peter Attia, 51

This cancer surgeon turned longevity expert says that in our later years we often live with ill-health and pain, crippled by diabetes, cancer, heart disease and dementia―he calls these the “four horsemen of chronic disease”. To change that, he says we need to focus on our healthspan (the number of years we live in good health) rather than just our lifespan (the number of years we’re alive). Celebrity fans of his 2023 bestselling book, Outlive: The Science & Art of Longevity, include Gwyneth Paltrow, Arnold Schwarzenegger and Oprah Winfrey, and he hosts a podcast about longevity called The Drive.

Tim Ferriss, 46

Ferriss had a nutritional supplement business before he struck it big when he published The 4-Hour Work Week, which presented a working structure that subverted the idea of long hours as a path to success. It was followed by The 4-Hour Body: An Uncommon Guide to Rapid Fat-Loss, Incredible Sex and Becoming Superhuman and then The 4-Hour Chef. He has a long-term chart-topping podcast called The Tim Ferriss Show, for which he interviews leaders in psychology, fitness and business as well as Hollywood stars about their optimisation techniques. Ferriss has invested heavily in research into therapeutic psychedelics at Imperial College London.

Nick Bare, 33

A fitness guru who is often shirtless when he films his intense training regimes for marathons, Ironman triathlons or ultra-marathons and posts them on YouTube for his 1.1 million subscribers to watch. He started building his supplement brand, Bare Performance Nutrition, as a side project while he was serving in the US army. It sells pre and post-workout supplements and protein powders. After he left the army he created a spin-off fitness training app, which costs Rs8,000 a year. On The Nick Bare Podcast he gives tips on longevity, nutrition, fitness and “human optimisation”.

Dr Paul Saladino, 46

Graduated from medical school but lost faith in western medicine and became a “meatfluencer” known as Carnivore MD, eating meat exclusively. He claimed his carnivorous diet, which excluded all dairy, carbohydrates, vegetables or fruit, was the way to achieve “optimal health”. He published The Carnivore Code followed by a cookbook. Then, in a podcast interview last year, he revealed that after five years on the carnivore diet his testosterone levels had decreased, plus he had sleep issues and joint and muscle pain. Now he promotes an “animal-based” diet, which includes fruit, honey and unpasteurised milk.

cerebral-palsy-could-not-stop-sarika-from-achieving-her-dream-of-becoming-a-civil-servant

Sat May 25 13:26:18 IST 2024

There is an innate confidence on Sarika A.K.'s face and a warm smile, too. The 24-year-old from Kerala―who ranked 922 in the UPSC exam―not only went through the rigours of preparing for the tough exam, as lakhs do, but she did so while battling cerebral palsy. “I prefer the IAS, but I am not sure whether I will get it. Whatever service I get into, I will do everything in my capacity for the differently abled community,” she says, sitting on her electric wheelchair.

Cerebral palsy is a group of disorders that affects muscle movement and coordination, with symptoms varying from person to person and ranging from mild to severe. There are four main types. Spastic cerebral palsy―which affects 80 per cent of those with cerebral palsy―is characterised by increased muscle tone, which leads to stiff muscles and awkward movements. Dyskinetic cerebral palsy affects the limbs and involves difficulty in controlling movement, leading to slow or rapid jerky movements. Ataxic cerebral palsy impacts balance and coordination, resulting in unsteady walking and difficulty with precise movements. Mixed cerebral palsy refers to symptoms that are a combination of different types of cerebral palsy.

Diagnosis typically occurs during the first two years of life, with tests to evaluate motor skills and monitor development, growth, muscle tone and more. “In my case, at birth itself, my legs were in a crossed position and doctors performed an immediate surgery,” says Sarika. “Six months later, additional difficulties emerged. I did not achieve the development milestones, prompting my parents to consult a doctor who identified movement and musculoskeletal issues. Further surgeries were recommended. At the age of five, I underwent a hip surgery to address the height discrepancy between my legs. Unfortunately, this procedure was unsuccessful and exacerbated my condition. Since then, I have relied on a wheelchair. Doctors suggested further surgeries, but we were unsure of their success and decided not to pursue it.”

Sarika is the daughter of Sasi, who is a driver in Qatar, and Ragi, a homemaker. She also has a younger sister. Her mother has been Sarika’s biggest support system. “Even now, I require assistance in all my daily routines, and my mother is helping me,” she says. “Throughout these years, she has taken care of me. She has dedicated her life to me.”

While speaking to THE WEEK, Ragi said that her daughter had to endure a lot of pain over the years, including not being able to be like the other kids at school. “A major issue we faced during those growing years was finding a physiotherapist in our locality,” she says. “Now, we have a physiotherapist who visits Sarika thrice weekly at home to ensure that her muscles do not get stiff.”

Accessibility also poses a great challenge for the differently abled, says Sarika. In fact, special arrangements had to be made at the centre for her UPSC mains exam in Thiruvananthapuram.

“During my primary school years, I remained in the same classroom for four years because the school had only one ramp. Although I progressed academically, my classroom remained the same,” she recalls with a smile, noting the invaluable support of her friends and teachers. “She enjoyed going to school; she never preferred sitting idle at home,” says Ragi.

Reading became a habit for Sarika during her upper primary years, and this habit eventually steered her towards the UPSC. “I came across a book, Collector Bro, written by former Kozhikode collector Prashant Nair,” she says. “It served as a great inspiration.”

One of her teachers then sent her information about Project Chitrashalabham (butterfly), a initiative of Absolute IAS Academy that offered scholarships for free civil service coaching for the differently abled. “I applied and was selected for online training,” she says. “I mostly studied during the night, as it was the most suitable time for me. I cannot sit for long hours, so I took breaks. Whenever I had back pain, I would lie in bed for 30 minutes to an hour.”

During her school years and into her late teens, Sarika had a manual wheelchair. Only last year did she get an automatic one, which significantly enhanced her mobility and made her more independent. It also helps that she is not currently on any medication. “However, my physiotherapist helps me with stretching and movement exercises,” she says.

Sarika adds that though she has grown up to see society becoming more inclusive, there is a lot left to be done. “When I was in school, the concept of accessible toilets or classrooms did not exist,” she says. “Transportation posed another significant challenge; public transport was inaccessible for someone like me, so I had to rely on auto-rickshaws, which cost a lot.”

Sarika will now get an official vehicle as a civil servant. But her ultimate dream is to take along as many differently abled people as she can on this journey.

taking-good-care-of-your-bones-will-take-a-big-load-off-your-old-age

Sat May 25 13:22:44 IST 2024

Dr Sandeep Kapoor calls himself a docpreneur. The orthopaedic surgeon specialises in trauma and joint replacement surgery. He did his MS from King George’s Medical University, Lucknow, and is a DNB, and the recipient of many prestigious fellowships. Dr Kapoor worked in the not-for-profit and the corporate sectors before co-founding the Health City Hospital in Lucknow, and is in the process of setting up another 300-bed hospital. An avid listener of podcasts, he is also a golf enthusiast.

Essentials about bone health: The human body is made up of the musculoskeletal system. The skeletal part is the bone, and the surrounding is the musculature. Bone health encompasses bones and muscles; and the point at which two bones join each other―joints. For an infant on mother’s milk, it is a sufficient diet that provides calcium for the growth and nutrition of bones. Adequate diet is important right from childhood. Drinking pasteurised milk (without boiling), using iodised salt are some of the habits we have always followed. It is also important to get adequate sunlight. The other important component is activity. Body movements with pressure stimulate growth.

As we grow: Medicines do not have a large part to play in bone growth and health, but habits, nutrition and lifestyle do. Alcohol will harm you. Red meat eaters could have high uric acid levels, which will in turn lead to joint pain and further harm the joints. Wrong posture can lead to head and neck pain. Till the age of 40, the calcium we intake and the calcium in the bones maintain a kind of equilibrium, but post that, calcium from the bones starts to deplete; and muscles begin to waste.

The start of trouble: Some people will be genetically predisposed to rheumatoid arthritis. This is a long-lasting auto-immune condition in which the body’s defence mechanism attacks its own tissues leading to pain, swelling and stiffness. Other kinds of arthritis might manifest in certain people without warning signs and we cannot prevent them.

Three broad challenges: Calcium (and vitamin D) deficiency in children leads to rickets; in adults to osteomalacia; and when bone mass begins to fall it leads to osteoporosis which changes the strength and structure of bones.

What we can control: Every particular height and body structure is made for certain loading. Excess load will lead to both joint and bone pain. Thus having control over one’s weight is very important.

Calcium supplements: It is a myth that every fracture needs calcium. If a fracture is caused by say an injury, then it does not. Calcium would be more relevant for weak bones. Thus, underlying pathological causes need identification before prescribing any supplement. Ideally, one’s diet should be adequate to provide the body with the essential vitamins and minerals. The challenge is to identify the deficiency points in one’s diet.

Is lactose intolerance a myth? No, it is not, but how many people have been diagnosed as such? On the other hand, take up any (prescribed) diet these days, it will have no milk because milk is calorie dense. We see calcium deficiency more in urban patients because for the rural population which has cattle, milk is still an important part of the diet.

Vitamin D deficiency: This is definitely not because of the lack of sunlight but we have not been able to pin point the reason behind it. Vitamin D is essential for absorption of calcium. How much one requires depends on age and stage (lactating mother versus post-menopausal woman, for instance). When given as a combination with calcium, it is for maintenance. In case of deficiency, it is prescribed separately in pure, heavy quantities according to international standards. But there are various schools of thought among endocrinologists, paediatrics and ortho-physicians about how this is to be given―in low doses every day, alternate days or in weekly doses. Expert advice is essential because vitamin D toxicity is real.

The role of genetics: If a mother has osteoarthritis, offspring will have a predisposition to it, but this is not proven. There are certain genetic bone syndromes that are beyond what we are discussing here.

The gender differential: Menopausal women are at risk for osteoporosis and osteoarthritis―two conditions that are often incorrectly understood. Osteoarthritis, which I have seen almost always in women, is age related arthritis of the weight bearing joints. In the west, this mostly affects the hips; while in India it is the hands and knees that bear the brunt. Osteoporosis is a condition where the bones are weak and prone to breaking and fracturing easily. It is common in post-menopausal women because of falling levels of oestrogen. (According to some studies, women lose 10 per cent of their bone mass in the first five years after menopause). Pregnancy, lactation, menopause all contribute. Recovery in male patients is much faster than female patients, probably because their bones are stronger to start with.

High life expectancy, more fractures: Age-related fractures are like an epidemic with increasing life expectancy. This is not just a health problem but also a socioeconomic one as not everyone in the growing elderly population has an insurance. Expensive implants, keeping these patients in critical care and monitoring them while family members are busy―all of these are challenges.

Understand activity right: What we do in our daily life as part of everyday chores or our jobs does not count as activity as the body is used to it. There are two parts to it―activity for the muscoskeletal system and for lung health; or weight training and cardio. Yoga is very good. For the heart, 45 minutes to an hour of walking is essential. This helps the heart to develop more vessels to pump better. Let us say we get a 40-year-old patient who has difficulty climbing the stairs. His cardiologist and his diabetes doctor have asked him to walk. Arthritis patients have no problems in straight-walking, it is elevation they find difficult. Thus, activity should be in tune with orthopaedic condition. Activity becomes a problem when you disregard your orthopaedic reality. If you are turning 60 and have never jumped in your life, and suddenly decide to do high-jumps, remember your body is not tuned for it. On the other hand, one who has been a marathon runner will be able to run till the age of 90 and beyond.

We hear of so many deaths during/post gym workouts. That is possibly because people are pumping huge amounts of weight but the body is not used to the sudden increase in the musculature of the heart. I am also a strong proponent of activities for mental fitness for while people might have healthy bodies, their minds are not healthy.

Balance is the key: As we age we tend to lose muscle strength and put on fat. There are fads such as intermittent fasting where people are accelerating this muscle loss, while the focus should be on losing fat. If you are doing your mandatory 45-60 minutes of brisk walking but following it up with a fat rich breakfast and partying till late in night, you are undoing all the good. Excess of anything is bad. Pain and fatigue are very important deciding factors for what our bodies are meant for.

Pointers other than pain: Fatigue and lethargy are indicators that something is wrong. Drop in alertness, fall in energy, lack of sleep or too much sleep are also indications that something is wrong. Weak neck muscles, for example, can lead to headaches. So we ask the patient to build neck muscles. Similarly if you were once able to climb steps easily but not anymore, build quad muscles with advice from a trained specialist.

The various stages of problems: Stage one and two might have very mild problems such as occasional pain, which you might notice only if very careful. It will not show up in X ray findings. In the first, mild painkillers will work. In the second these will be supplemented by physiotherapy.

Knee replacement surgery: Come stage three and the symptoms become obvious―walking with a waddle or a duck like gait, having bow legs, knock knees or other deformities. Such patients are in constant pain and might have difficultly even using the washroom. When lifestyle modifications, physiotherapy, medicines, precautions and external support all fail, patients require replacement surgery. Some expensive joint health supplements (collagen peptides, glucosamine, C supplement) are available and might help.

Knee problems are epidemic: Particularly in females (caused by all the factors discussed above and made worse by longer life spans). Replacement surgery is a well-accepted procedure and understood by lay persons. Its success has also been well demonstrated.

The use of AI: In medicine, AI should be used where the human eye cannot see or cannot see very clearly―such as cancer of the prostate sitting behind a bone. For knee and hip there will be selective indications for use of AI. We have been using everything from computer navigation to robots. AI has its limitations in a country like India where people are unable to get a knee replacement even in the most conventional form.

Myth that surgery is very expensive: Not really, but big players have jacked up costs. We need the government’s support to bring these down. Government hospitals are conducting a high volume of knee replacement surgeries. There is also a government fixed ceiling on the cost of implants.

Rehabilitation period: Results and down time depend on timing of surgery. Hospital stay is generally between three to five days. If a patient comes with functional problems, before the bone on bone stage, the muscles have not deteriorated and recovery is faster. Timing is important. Joint surgery should happen ideally just once in a lifetime. Revision surgery is mutilating and results are unpredictable.

Quality of life: While it does come back to normal, you will not become an athlete. You will not be running, but you will easily be able to walk three to five kilometres a day. Remember, this is tied in with the age of the patient.

The next epidemics: Patients who have had a knee replacement surgery and lived on for 20-25 years will need replacement surgeries. Peri prosthetic fractures―those that happen around joint replacements―will also come in. There is nothing patients can do to prevent these.

An ideal patient: One who is in the 60s. If your quality of life is extremely compromised, do not wait till 60. When everything else has failed, such a patient should ideally come to you walking and not in a wheelchair (which indicates poor muscle strength).

Common risks: If a patient has been not walking for long, there might be deep vein thrombosis (DVT) wherein s/he gets blood clots in the limbs from which they can go to any other part of the body and lead to strokes or cardiac arrest. However, prophylaxis are given for these conditions and it rarely comes up as a challenge in surgery. A bigger concern are infections. That is the reason the patient should find out the number of surgeries being done in that centre and if the infrastructure is designed to minimise infections.

punitive-psychiatry-a-tool-of-abuse

Sat May 25 13:17:41 IST 2024

Psychiatry has profound potential to heal human minds. Nonetheless, history serves as a stark reminder that, in the wrong hands, it can become a tool of abuse.

The term ‘punitive psychiatry’ refers to the abuse of psychiatric practices such as diagnosis, detention and treatment to violate human rights. In April, the International Federation for Human Rights in Mental Health and the Andrei Sakharov Research Centre for Democratic Development at Vytautas Magnus University, Lithuania, released data that showed a surge in psychiatric abuse against civilians who “exhibit anti-war behaviours” in Russia. Their study revealed that, as of March 24, at least 35 individuals were subjected to involuntary “treatment” in psychiatric facilities across Russia. Prominent among them were opposition activist Olga Nedvetskaya, medical student Alexey Korelin and teenage protester Yegor Balazeikin.

Another such case is that of Alexander Gabyshev, who embarked on a cross-country trip to Moscow’s Red Square to perform a shamanic ritual that he said would peacefully oust President Vladimir Putin. Gabyshev, too, was subjected to punitive psychiatric practices. Dissidents like him have reportedly undergone intrusive surveillance, violent threats, humiliation, compulsory medication, physical restraint and other measures that infringe on their rights.

Psychiatric abuses were a prominent tool of repression in the Soviet Union, particularly in the 1970s and the 1980s. It is estimated that approximately one-third of political prisoners in Russia were confined to psychiatric hospitals, leading to a significant rift within the World Psychiatric Association. The Soviets were compelled to withdraw from the association in 1983, and returned conditionally only in 1989.

According to Robert van Voren, a Dutch human rights activist who led the study on punitive psychiatry at the Andrei Sakharov Centre, most countries that were part of the Soviet Union have made strides in developing mental health care services based on ethical norms. But Russia, under Putin, is backsliding.

Punitive psychiatry has been in practice in other totalitarian regimes as well. Last year, a criminal court in Iran ‘diagnosed’ three prominent actresses―Azadeh Samadi, Leila Bolukat and Afsaneh Bayegan―as anti-family, antisocial and mentally ill for not wearing the hijab. Top Iranian psychologists condemned the court’s decision, and denounced the misuse of psychiatry by the judiciary. China, too, has faced accusations of employing punitive psychiatry against the Uyghurs.

Even liberal democracies have had instances of punitive psychiatry. In 2009, Adrian Schoolcraft of the New York Police Department blew the whistle on his superiors who manipulated crime reports. As a response, he was arrested and held for six days in a psychiatric ward at Jamaica Hospital Medical Center. Subsequently, he filed a lawsuit against the police department, alleging intimidation and retaliation. The case was settled in 2015, with Schoolcraft receiving $6,00,000 in compensation.

transitional-care-centres-can-add-a-lot-to-india-s-health-care-system

Sat Apr 27 15:15:25 IST 2024

Some years ago, Hyderabad resident Krishna Mohan was diagnosed with a lung condition that required immediate medical attention. He underwent treatment at a leading hospital and was subsequently discharged. However, the family was instructed to install an oxygen cylinder at home just in case. Soon, he was diagnosed with a failing liver and, once again, got treatment and was discharged. His family was asked to monitor his health closely. They turned one of their rooms into a makeshift nursing ward, hiring nurses and taking turns caring for the patient. This placed a significant strain on both their mental and financial wellbeing.

Today, if faced with the same situation, a family could handle it differently. They could consider transitional care centres, which are slowly becoming a crucial part of the Indian health care system. Transitional care comes into play when patients no longer require acute medical care in hospitals, but still need rehabilitation or ongoing treatment.

Although still relatively scarce, established transitional care centers can be found in cities like Hyderabad, Delhi, Mumbai and Bengaluru. And though awareness of transitional care remains low in India compared with the west, the number of patients and available beds are steadily rising. The patients typically admitted to these centres include those who suffer from cancer, stroke, orthopaedic problems, long Covid and cardiac ailments.

Ucchvas, based in Hyderabad, is one of the leading transitional care providers in the country. Since its establishment in 2018, the organisation has treated more than 2,000 patients and has 65 beds at its two centres. Ucchvas received positive reviews for its work during the pandemic and, with high occupancy rates at both centres, it is planning to expand.

One of the patients at Ucchvas was Masoom Pasha, who had a stroke. After receiving necessary treatment, he was transferred to Ucchvas for rehabilitation, where he received care from a speech specialist and others. After nearly three weeks, his wife, Nusrath, is optimistic about his recovery.

Families often find that the therapy and treatment at transitional care centres make a significant difference and instil confidence in patients. The affordability factor also works in favour of these centers. Said Dr Ambati Rampapa Rao, founder-chairman of Ucchvas Transitional Care: “When I established the centre, I aimed to ensure that patients do not spend more than 25 per cent of what they would at a private hospital. I am pleased that we have kept the costs lower than that.”

Rao, an anaesthetist, conceived the idea after some friends in the medical field found it increasingly challenging to monitor and prevent morbidity and death post-hospitalisation.

Upon a patient's arrival at Ucchvas, a treatment protocol is designed based on their condition, which might require multiple specialists and personalised care. Rao noted that patients typically stay at the centre for weeks, and in some cases, even months.

The centre also employs best practices and innovations to facilitate better patient recovery. For instance, recovery mapping helps develop more effective rehab therapy models using datasets, and plateau stage tapping is applied to predict and prevent progress stagnation. Considering patients' mental health, recreational therapy sessions are also offered.

Brinnova Transitional Care and Rehabilitation Centre is another well-known brand in Hyderabad, founded by doctors M.V. Sumanth Reddy and Pavan Reddy, who previously worked in corporate hospitals. “In some hospital rooms, you do not even see windows,” said Sumanth. “We made sure every room has ventilation so that patients do not feel suffocated. We ensured that there are no steps near bathrooms for patient safety.” Brinnova operates two centres in Hyderabad, with 100 beds, and is beginning to attract patients from various parts of the country.

In a typical transitional care setting, patients have access to multiple specialists, including psychologists, and necessary help to address mental health concerns that cannot be taken care of at home.

Pavan also underscored the role of a family member, who must be with the patient, as they play a crucial role in the recovery process. “Here, the family role is almost 50 per cent,” he said. “For example, in accident cases, we often encounter alcoholics. Having family around helps them cope with withdrawal symptoms.”

The primary challenge faced by transitional care providers is the lack of recognition by insurance companies. In India, those admitted as in-patients typically have to pay out of pocket because insurance companies fail to categorise transitional care as hospitalisation. Another challenge is finding space as increasing real estate prices in cities have pushed back efforts to start more facilities. Industry stakeholders also believe that the government should introduce policies and programmes to boost their services.

Rao said India needed more transitional care centres because of the growing population of elderly adults. According to various research reports, the transitional care management industry is growing at 17 per cent annually worldwide. And though many people in India see it as just another hospital, these centres have a unique identity and purpose.

how-well-drug-regulation-policies-can-be-implemented-in-india

Sat Apr 27 15:13:02 IST 2024

East Delhi resident Gaurav Kumar has entirely shifted to Jan Aushadhi Kendras for medicinal needs. He unequivocally dismisses doubts over the quality of drugs sold at the Centre-run kiosks. “The price difference is also whopping, 50-90 per cent,” he says. Anil Vats, a retired government servant from Ghaziabad, says: “My lung disease tablets cost Rs250 per pack. At Jan Aushadhi, I get it for Rs60.”

To ensure quality, all batches supplied to over 10,000 Jan Aushadhi stores across 750 districts go through double checks. Ravi Dadhich, CEO, pharmaceuticals and medical devices bureau of India, ministry of chemicals and fertilizers, tells THE WEEK: “After procuring medicines from WHO GMP (Good Manufacturing Practices) certified suppliers, each batch is again tested at our laboratories to ensure quality.”

Certainly, these stores are striving to provide affordable generic medicines. This, however, is only a small part of the story. The ecosystem of generic drugs in India is far too wide and cumbersome. Generic or branded medicines have no specific definitions. They, for all purposes, generally “contain the same active ingredient in the same dosage form, intended to be administered by the same administrative route” as the branded drugs.

Dr Preeti Kumar, vice president, public health system support of the Public Health Foundation of India, explains: “There are primarily three types of drugs―generic, branded-generic and patented.” She adds that the generic and patented together constitute around 20 per cent of the market. “The remaining 80 per cent is covered by branded-generics that constitute around 2,800 formulations and unique molecules for various diseases spanning over 55,000 brands,” she says. “If we keep the patented drugs aside (which is only 8-10 per cent), the issue of quality remains with both generic and branded-generics and it is not entirely correct to equate branded-generic with quality.”

Dadhich adds, “The generics sold under a brand become branded-generics.” By numbers, the labyrinth is even more gigantic―India is the biggest exporter of generics to around 200 countries. The top five importers are the US, Belgium, South Africa, the UK and Brazil. More than 60,000 generic drugs are produced in India across 60 therapeutic categories. India's drug and pharmaceutical products exports grew by 125 per cent from Rs90,415 crore in 2013-14 to Rs2.04 lakh crore in 2022-23. “These constitute 5.71 per cent of the total exports and ranks third worldwide by volume,” according to the ministry of health and family welfare.

Domestically, the market reach in India is to the tune of Rs1.5 lakh crore. The enormity of the sector speaks volumes about the inadequacy of all government schemes put together in making medicines affordable, accessible and acceptable to all.

Understandably, therefore, the doctors were up in arms over a government order making it compulsory to write generic names on prescriptions. Although existing rules do exhort physicians to prescribe drugs with generic names, the mention of penalties for non-compliance and potential licence suspension in the August 2023 order took the doctors by surprise. Their vociferous opposition forced the government to put the directions on hold within two weeks. At the heart of the doctors’ opposition was the uncertainty over quality of generic drugs.

“The government is sensitive on the issue and understands,” says Sharad Aggarwal, president of the Indian Medical Association, which led the resistance. “That is the reason they reversed the decision. Spurious drugs is a national issue and all of us will have to show maturity in handling the situation.”

The doctors’ apprehensions are not misplaced. A recent study by the Postgraduate Institute of Medical Education and Research, Chandigarh, attests to the substandard quality. In the study, published in an international journal, subjects given a patented (innovator) drug achieved better therapeutic levels than those administered the generic counterpart.

Dr Rahul Singh, head of critical care unit, Yathartha Hospitals, concurs with the findings of the study. “Certainly, the efficacy and blood levels will differ in case of generic medicines and innovators,” he said. “In case of generic drugs, the standards and optimisation is not validated so the results are compromised.”

This issue acquires additional significance as the WHO says that generic products must satisfy the same standards as innovator products. Legislatively, the rules in India forbid malpractices in manufacturing of drugs. Pharmaceutical companies claim that apart from compliance necessities, the risk to reputation leads brands to meet global standards. “To ensure quality of medicines sold under brands, companies adhere to rigorous quality measures,” says Nikkhil K. Masukar, CEO, Entod Pharmaceuticals. “They conduct thorough testing, follow GMP and comply with regulatory standards to guarantee the safety and efficacy of their products. Brand reputation is often built on a commitment to delivering high-quality medications, and companies invest significantly in maintaining these standards.”

Dr Rajeev Sood, vice chancellor of the Baba Farid University of Health Sciences, Faridkot, Punjab, says that while the guidelines are ideal, the problem lies with the implementation. “There is no set mechanism to monitor the quality of generic medicines,” he says. “Batch by batch, the quality is different.” Dr Girish Mathur, president of the Association of Physicians of India, adds that there is a pressing need to put mechanisms that ensure quality.

Aman Gupta, managing partner, Health Practice Asia Lead, Spag Finn, a Gurugram-based consultancy firm, says common assurance needs to be provided on quality, efficacy and safety. “In recent times, questions have been raised on manufacturing practices and quality standards of Indian drugs (specially generics), not only within India but at the global level,” he says.

Insiders reveal that the quality erodes as a result of manufacturing and market imperfections. “The problem arises when the approval procedures are sometimes compromised because of corruption at multiple levels,” says an employee of a leading pharmaceutical company, who requested anonymity. “The minuscule levels of monitoring of the samples add to the woes and the sub-standard quality reaches the market.” He adds that Indian generic manufacturers start compromising on the quality to sell on lower costs engendering “camouflaged competition”. “The quality is majorly compromised when it comes to the huge domestic market and exports to developing markets such as Africa, West Asia and East Asia,” he says.

The IMA had recently pointed out that less than 0.1 per cent of the drugs manufactured in India are tested for quality. Multiple alerts from the WHO on sub-standard quality of Indian cough syrups in the wake of a number of overseas deaths linked to India-made drugs in countries like the Gambia, Cameroon and Uzbekistan is a case in point. However, that is not the case with exports to developed countries. The stringent regulatory systems and authorities in western and European institutions like the US Food and Drug Administration and European Medicines Agency make it risky for the manufacturers to export inferior quality.

The impediment to ensuring quality, especially for domestic consumption, experts believe, is the ever expanding gulf between demand and the requisite infrastructure, expertise and finance. “Every product should be checked,” says Sood. “But, we do not have the wherewithal to monitor effectively. We do not check where the raw material has been sourced from, there are no proper labs for testing.”

An important factor, according to Kumar, is that India has a federal structure and health is a state subject. “The regulation is also done by state drug control organisations,” she says. “Therefore, it becomes important that states also make adequate budgetary allocations to pick samples and send them to laboratories for testing to ensure quality. Both generic and branded-generic drugs are same in dosage form, chemical strength and quality checks. However, some are directly marketed through prescribers and pharmacies and in some cases the quality of the medicine is associated with the degree of regulation.”

Doctors also blame pharmacies for the bad quality. “It should not only be about controlling doctors but also about controlling the pharmacies,” Sood points out. “Pharmacists manufacture their own medicines and sell them in large numbers. There have also been instances when certificates have been sub-let, thereby exploiting the guidelines.” Aggarwal adds that the move to prescribe generic names gives more power to pharmacists, who may give the medicine which suits their interests and may not align with patients' interest.

There is unanimity on the urgent need to have a “centralised” and a more “proactive” system of testing to make safe and affordable medicines available to all Indians. Says Kumar: “The regulatory investment will have to be commensurate with the quality of the medicines. Best practices at all three levels―procurement, testing and regulation ―will have to be extended to a much wider base to ensure quality medicines reach the market.”

The government’s efforts to strengthen regulations and promote generics are lauded by a few. “Generics have to be the way forward,”says Priyadarshi Mohapatra, founder and CEO of Curebay, promoting e-clinics in rural Odisha. Adds Dr Sujit Chatterjee, CEO, L.H. Hiranandani hospital, Mumbai: “By advocating the use of generic drugs, the government is promoting an environment in health care that respects accessibility and affordability.”

Kumar also agrees that the government is really upping the regulatory mechanisms to ensure only quality drugs come into the market. Aman Gupta praises recent steps by the Drug Controller General of India, including implementation of QR codes and the decision to overhaul drug regulations. He considers work towards framing the Drugs, Medical Devices, and Cosmetics Bill “a crucial step towards upgrading and streamlining the regulatory framework.”

In late December, 2023, the Union health ministry notified its new Good Manufacturing Practices for pharmaceutical products. The new rules facilitate major changes in ensuring quality and categorically hold senior management of the manufacturing companies responsible for quality. The new guidelines are seen as a step in the right direction to elevate the quality of drugs to global standards.

Says Dr Viranchi Shah, national president, Indian Drug Manufacturer Association, “The new rules will of course make a difference in aligning more with the WHO standards and is a welcome step in upgrading the sector.” However, he suggests that a larger window could be given for transitioning, especially to the small industries. “We should engage with small and medium enterprises, handhold them and help them become a part of the envisaged new normal,” he says.

Reiterating the IMA’s stand on introducing “one drug, one quality, one price system”, Aggarwal says, “Why not subsidise the health sector the same way as other sectors are subsidised? The government should do away with this differentiation of generic, branded, non-branded and find a permanent solution to this problem.”

While the government’s intentions to ensure quality is apparent, how much the rules are going to match the monitoring on the ground to make Indian drugs risk-free remains to be seen.

nobel-hygiene-adult-diapers-friends-support-quality-living

Sat Apr 27 15:07:47 IST 2024

When the idea of using an adult diaper was first suggested to Narendra Mishra, now 75, his instant reaction was outright rejection. “Do you want to shame me? Am I so helpless? Is my life a burden?” he remembers asking his son.

Seven years ago, when the suggestion was first made, Mishra had no alarming health concerns. But a persistently low blood pressure made him dizzy if he got up suddenly, and chronic knee pain made walking to the toilet onerous. Nights were particularly challenging.

In a country where social conditioning has led us to believe that a marker of being a grown-up is the ability to control bowel urges, and to clean up after oneself, Mishra’s concern was not misplaced.

Dr Abhishek Shukla, senior geriatric physician who established Uttar Pradesh’s first and only dedicated elderly care facility, Aastha Geriatric Hospital and Hospice in Lucknow, said a number of psychosocial reasons stood in the way of diaper acceptance. “As we age, there is natural functional decline in our five essential organs―heart, lung, liver, kidney and brain. This becomes difficult to accept as our conversations around healthy and graceful ageing are still nascent. There is an urgent need for seminars, awareness building and the like,” Shukla said.

While incontinence, he said, could be age-related (for instance, the outcome of a natural weakening of the bladder and pelvic floor muscles), it could also result from a completely different cause such as hypocalcemia (too little calcium in blood), which when corrected would reverse the incontinence.

Incontinence itself can be either urge- or stress-induced. The first is when a person feels the need to use the toilet immediately; the second is caused by pressure on abdominal muscles. “For persons who are at the end of their life, the use of diapers becomes non-negotiable. For others, whose senses are functioning, acceptance is a great challenge, for they perceive it as an assault on their dignity and self-respect,” said Shukla.

Then there is incontinence that is not age-specific, caused by injuries or illness. As Shukla explained this, a patient walked into his chamber. When asked if he would ever consider using a diaper, the patient said he never would. “It is a psychological sign that I am becoming feeble and helpless. It is better to die than continue like this,” said the patient.

Ujjwala Shanker is the sole caregiver to her 88-year-old father and 76-year-old mother. The former has Alzheimer’s disease while the latter lost a majority of her senses after a brain surgery in 2020. The decision to begin using diapers was not an easy one. Shanker initially tried seating her parents on a commode every couple of hours, but when their physical frailty made this challenging, the shift to diapers was made.

For a couple of years, Shanker herself changed her mother’s diapers, sometimes every two hours at night. (She employed an attendant for her father.) It took a toll on her―she was permanently sleep deprived and unable to focus on the school and enterprise she runs. She became, in her words, a “zombie”. She now has two attendants to look after her parents round the clock, and spends Rs35,000 to Rs40,000 every month to care for her parents.

“I have very rarely had patients who are willing to use diapers, even for the off chance that they might sometimes soil themselves,” said Shrikant Srivastava, professor of geriatric psychiatry at King George’s Medical University, Lucknow. According to him, a major mental block is that people are conditioned to not let poop stick to the skin. “This habit is ingrained, and diapers feel unnatural,” he said. There is also the embarrassment of foul smell, and often lying for long hours in one’s own refuse if help is not readily available.

Research says it takes almost a year and a half for adults to accept diaper use. The various stages in this journey include denial, concealment, rejection and reluctance.

Thus, diaper manufacturers have to look beyond business. Said Kartik Johari, vice president of marketing and commerce at Nobel Hygiene, India’s largest manufacturer of disposable hygiene products: “We are not in the business of just creating quality products. Our goal is to consistently empathise with all our users, listen to them, and create products that may solve key issues they face. Our marketing strategy has been more about educating users, and de-stigmatising adult diapers.”

Nobel Hygiene has named its adult diapers ‘Friends’, underscoring the concept that these are not clunky products to be ashamed of, but ones that support quality living―much like a compassionate companion would.

Nobel launched its adult diapers in 1999, and later the country’s first pants-style adult diaper, and kept churning out innovations that include antibacterial absorbent gel that prevents urinary tract and related infections; odour-lock technology that controls release of foul smells; ultra-slim designs that are not revealing when dressed; and fibre waistbands for better fit and elasticity.

Yet, uptake remains slow.

Mishra, for instance, took more than five years to accept the pants-style diapers he now uses. “I have greater freedom to move about, and even go to the cinema with my grandchildren,” he said. “To be young and in control was wonderful; but now, I accept myself as I am.”

cosmetic-surgery-risks-associated-results-you-can-expect

Sat Apr 27 14:47:24 IST 2024

The Indian surgeon Sushruta (circa. 1000-800 BC) is considered the ‘father of plastic surgery’. The earliest form of such surgery was the use of skin from other parts of the body (arm, cheek, or forehead) to reconstruct amputated noses. The word ‘plastic’ in the term comes from the Greek 'plastike', or the art of modelling or sculpting. While originally used for restoration, it has now expanded to rejuvenation and enhancement. Between eight to 10 lakh cosmetic surgeries happen in India every year, and the country is one of the most popular hubs for such procedures. Surgeries which are considered medically necessary (like those for correcting nasal deformities which hamper breathing) are covered under insurance, while the rest might or might not be.

Dr Amit Gupta, MBBS, MS and DNB, is the founder and chief surgeon at Divine Aesthetics in Delhi. He has treated over 25,000 patients from the US, the UK, the UAE, Canada, Australia and Russia. When not wielding the scalpel, he likes to play the piano.

In layman's terms: Cosmetic surgery is the science of enhancing a person’s natural body aesthetics. It helps individuals attain bodily features that complement their body or face type better.

Difference from plastic surgery: Plastic surgery encompasses a broader scope, including procedures like cancer reconstruction, birth defect correction (like cleft lip), and accident injury reconstruction. It can be divided into two main categories: reconstructive and cosmetic. Cosmetic surgery does not have further subdivisions. It is optional in most cases since it enhances a person's appearance whereas reconstructive surgery is a medical necessity.

An ideal patient: One who understands what is achievable, recognises the importance of the changes, is emotionally stable and socially settled, and has realistic expectations from the procedure.

Post-surgery downtime: This varies depending on the procedure. While minimally invasive procedures like fillers and botox require no downtime, more extensive surgeries like breast implants may require a day while procedures like tummy tucks may require up to six days.

Make me look like a film-star! One of the most common misconceptions about surgery is that you can look like your favourite film star (Katrina Kaif being among the most popular). However, a surgeon cannot achieve a body shape or structure that replicates any other person. Therefore, the patient’s expectations are brought down to reality. What is achievable and what is not is clearly explained. Then it is assessed whether the patient is able to understand what we can create. If they have expectations beyond reality, then they are not ideal candidates for surgery. This is because most of the time these patients are not satisfied with the results, approach surgery in an obsessive way, undergo multiple surgeries and end up with botched looks which eventually bring a bad reputation to cosmetic surgeries.

The vital role of counselling: It helps us assess if the person can understand the results that are possible with surgery. It also helps to determine if a person is obsessed with looks, and is thus not a suitable candidate.

The changing age of patients: While the lower age range has come down to 18 or 19 years, the upper range has increased from 60 to 65. There is a rise in the desire to look more presentable, there is more awareness, and there is also the increased safety of cosmetic procedures. Social media has also played a vital role by making people more inquisitive about available procedures.

What age is ‘too’ old: Generally, a person should be an adult to undergo cosmetic surgery. As for the upper limit, we don’t usually have a cap as long as the person is medically fit for surgery. Even a 70-year-old can undergo cosmetic surgery safely if the body permits.

Essential questions for the doctor to ask: Is the candidate medically fit for such a procedure or do they have contra-indications that could affect the surgery? If they are on blood thinners, for example, they cannot undergo a breast implant surgery immediately because of the risk of excessive bleeding. Does the patient have someone to take care of them after the procedure? Can the patient’s expectations match the results that are possible medically? Is the patient willing to adhere to the doctor’s post-operative advice? Is the patient in the right headspace to understand what is being done?

What you should ask your doctor: What are the results going to look like? What could be the procedure's possible side effects? How much rest is needed post-procedure? Is there any additional procedure that needs to be done? What are the possible complications of the procedure?

When would a doctor say no? Undergoing a procedure for purely cosmetic reasons is not a contra-indication as long as it is medically safe and the person understands the changes that are going to happen. If someone approaches the procedure without knowing or understanding the consequences, then it is a contra-indication for me.

Beware of:

* Medical complications: Undergoing a procedure without a prior medical test for conditions like diabetes, high blood pressure or heart disease that could cause a problem during the procedure.

* Choosing the wrong surgeon: Not every surgeon is qualified to perform all procedures.

* Under-qualified clinics: There are many clinics that are not recognised by the government and operate without adhering to proper guidelines, certifications, and standards.

* The low-cost trap: Many people fall for low-cost procedures which use poor quality consumables like Chinese and Korean breast implants.

* Poor post-surgery care: Many people don’t adhere to the recovery time that is suggested by the surgeon and start indulging in sports and physical activities sooner than they should. This often aggravates the scars and disrupts the healing process, thus impacting the desired results.

A one-time procedure: Every surgery is a one-time procedure, but the process may require management. For example, we can conduct a hair transplant on someone, but with time they are prone to losing more natural hair and would require hair fall treatment. In the case of facelift surgery, the results last for eight to 10 years, but the impacts of sun and pollution are ongoing. So the person might need additional treatment to preserve the quality of skin in order to reduce the signs of ageing.

Fads like the Brazilian butt lift (aka the Kim Kardashian butt): Every surgical procedure is to be approached with utmost caution. BBL is an extremely safe procedure, but has been criticised lately because of the poor technique used by some doctors. There are precautions and correct selections for every plastic surgery procedure. All procedures are completely safe as long as proper techniques are followed.

Procedures most in demand: For men, the most common procedures are hair transplant and gynecomastia treatment (male breast enlargement correction). For women, liposuction, breast implants and botox are the most common.

Top five myths: Plastic surgery makes you look unnatural. Hair transplant can cause migraine. Botox makes you look plastic. Breast reduction is very painful. Unmarried girls should not undergo breast implants.

How far is too far? Approaching cosmetic surgeries in an obsessive manner and doing multiple surgeries on one body part that creates an unnatural look.

Surgery makes one look unnatural: If done with realistic expectations, a skilled surgeon can deliver natural looks using modern cosmetic surgery techniques such as non-invasive procedures and second-generation dermal (skin) fillers. A skilled surgeon can use these tools to ensure you look like yourself, only rejuvenated.

Do breast implants break or tear? Average-sized breast implants used in today’s procedures can withstand up to 300 pounds of pressure before rupturing. It is unlikely that normal contact or force would cause your breast implants to rupture.

Migraines and hair transplants: There is no scientific evidence linking migraines to hair transplant procedures.

Botox equals plastic: The most common misconception is that botox makes one appear frozen or plastic. In reality, the enhancements made with botox injections can look exceptionally natural when performed by an experienced injector.

The pain of breast reduction: Usually, the patient is anaesthetised before the procedure so that they don't feel any pain. However, soreness can persist for two or three days after surgery. That is taken care of by mild painkillers and ice wrapping. Now, surgeons are developing methods to provide day-care surgery for breast reduction that will largely reduce the operation and recovery time.

Breast implants are a no for unmarried women: This notion stems from two concerns: breastfeeding and scars. There is, however, no evidence suggesting problems with breastfeeding after breast implant surgery. Breastfeeding is completely safe and possible after surgery. If done by an experienced cosmetic surgeon, there will be minimal bruising post the procedure, and the scars will vanish in due course. However, some patients who have poor healing and scarring tendencies must inform the same to the surgeon so that surgery can be planned accordingly.

effective-vaccines-developed-against-meningitis-in-african-region

Sat Apr 27 14:42:29 IST 2024

In sub-Saharan Africa, from Senegal in the west to Ethiopia in the east, and encompassing the northern part of Nigeria, there exists a region known as the African Meningitis Belt (AMB). Here, meningitis, a serious infection of the meninges―the membranes covering the brain and spinal cord―is hyper-endemic. The incidence of meningitis varies globally, with the highest rates found in the AMB. The region is particularly susceptible to meningococcal meningitis due to its high temperature, geographical proximity to the desert, and the influence of the dry season on air particulate concentration.  Historically, major epidemics have occurred in the AMB every 5 to 12 years, with the disease proving fatal in 80 per cent of cases if untreated.

Meningitis can be caused by various pathogens, including bacteria, fungi and viruses. Bacterial meningitis―caused by streptococcus pneumoniae, haemophilus influenzae and neisseria meningitidis―is the most common form leading to outbreaks. Experts warn that bacterial meningitis can result in blood poisoning, and can seriously disable or kill those infected within 24 hours. Last year saw a 50 per cent increase in meningitis cases across Africa.

Nigeria is one of the 26 hyper-endemic countries within the AMB. Between October 1, 2023, and March 11, 2024, Nigeria witnessed 153 deaths in seven of its 36 states, with over 1,700 suspected meningitis cases reported during this period. Nigeria now has become the first country in the world to introduce a new vaccine, Men5CV, which protects against five strains of meningococcal bacteria (A, C, W, Y and X), all capable of causing blood poisoning. Previously, vaccines were only effective against the A strain. This new vaccine employs the same technology as the meningitis A conjugate vaccine (MenAfriVac), which successfully eradicated meningococcal A in Nigeria.

Notably, Indian hands and brains had a role in the development of the life-saving vaccine for Africa. The multivalent conjugate vaccine took 13 years, and was made possible with financial support from the UK, as well as through a partnership between the international non-profit global health organisation, PATH, and the Serum Institute of India. Said Adar Poonawalla of Serum Institute of India, “As the first conjugate vaccine to safeguard against the five predominant causes of this deadly disease, Men5CV offers hope for a future free from annual outbreaks and epidemics in the AMB. It is a significant moment as we pave the way towards a healthier Africa, saving countless lives.”

clinical-interventions-have-to-be-aligned-with-the-patients-preference-and-understanding

Sat Mar 30 15:34:24 IST 2024

Medicines can be the lifelines of the health care system as they play a vital role in preventing, treating, and managing various conditions, contributing significantly to the overall health and wellbeing of individuals. While these medications are found in every nook and cranny of the country, we often tend to overlook the efforts that go into ensuring their efficacy and safety. With clinical trials, the journey from lab to patient takes its most crucial turn, revealing the true potential of each medication.

Clinical trials are scientific studies that test the efficacy of the medication in treating or preventing specific diseases. These trials also evaluate the safety of the drugs by understanding the potential adverse effects.

How do patients' insights shape decision-making in clinical trials?

Patients play an active part in the development of the product lifecycle and in shaping the narrative of a clinical trial. From their motivations to their daily lives, each patient's journey through a clinical trial is unique. Their insights provide a real-world perspective including disease burden, treatment complexities, and trial participation barriers along with the potential side effects, and the overall impact on the participant’s quality of life. This paves the way for clinical interventions to be aligned with the patient’s preference and understanding.

Advancements in technology have provided a range of digital tools that empower patients to actively participate in clinical trials. Mobile applications, web-based platforms, and wearable devices have become instrumental in capturing Patient-Reported Outcome Measures (PROMs), monitoring adherence to study protocols, facilitating real-time data collection and enhancing the objectivity and credibility of the trial data.

These tools enable patients to conveniently report their symptoms, side effects, and overall experiences directly to clinical investigators, eliminating the need for cumbersome paper-based methods and ensuring timely data capture.

Traditionally, patients had to visit clinics or research centres for regular assessments and data collection during clinical trials. Remote monitoring not only improves patient comfort and convenience but also reduces the burden on clinic resources and enhances data accuracy.

Tele-health has gained significant traction in recent times, particularly in response to the pandemic. This technology allows patients to have virtual visits with health care providers, eliminating the need for in-person consultations. In the context of clinical trials, tele-health can be leveraged to perform remote study visits, collect patient feedback, and provide support throughout the trial period.

Clinical trial designs are expected to become more complex in the future, generating even greater data volume and diversity. The future of clinical trials is expected to be remote and decentralised, with the use of technology to enhance patient and health care provider involvement.

Patient engagement in clinical trials reflects a future where trials are not just scientific achievements but compassionate journeys, shaped by the unique needs and experiences of every patient involved.

The writer is MD, executive director, medical sciences, Parexel India.

exosomes-superior-drug-delivery-ke-cheng

Sat Mar 30 14:56:55 IST 2024

Exosomes in our bodies function much like your neighbourhood couriers. Just as couriers transport packages containing important information or goods from one location to another, exosomes carry various cargo molecules, including proteins, messenger RNAs and microRNAs, facilitating communication between cells. These tiny spheres transport fats, proteins and genetic material, playing a crucial role in regulating everything from pregnancy and immune responses to heart health and kidney function. A recent study published by Columbia University suggests that these nanobubbles could be utilised in inhalation therapy to treat lung cancer.

Lung cancer is widespread and has one of the lowest survival rates among cancers. Cytokines, such as interleukin-12 (IL-12), show promising potential as potent tumour suppressors. However, their effectiveness is limited by severe adverse effects.

Now, a groundbreaking method developed by Ke Cheng, a biomedical engineering professor, and his research group presents a new avenue. Exosomes, naturally secreted by the body or cultured cells, possess low toxicity and multiple mechanisms for delivering their cargo into cells.

Historically, clinicians have primarily administered IL-12 for cancer treatment through direct injection into tumours or the bloodstream. While scientists have previously used liposomes or lipid nanoparticles to deliver mRNA, these methods face challenges such as insufficient tissue targeting and concerns about long-term toxicity. Over the past 15 years, Cheng’s group focused on developing exosomes as superior drug delivery carriers compared to liposomes and lipid nanoparticles, particularly in specific medical applications.

Cheng's laboratory discovered that administering IL-12 mRNA enclosed in exosomes via inhalation not only localises concentrated IL-12 delivery to the lungs but also enhances cancer-fighting efficacy with minimal side effects. Moreover, inhalation is entirely noninvasive; there is no requirement for a nurse to administer treatment intravenously. It was observed that the inhalation method is more efficient in building higher concentrations of IL-12 right where it is needed than other ways of delivering mRNA.

Inhaling the nanobubbles containing the blueprint for IL-12 can activate lung immune cells and transform them into formidable defenders capable of releasing substances that directly target and eliminate tumour cells. Furthermore, IL-12 aids in training these immune cells to remember the unique characteristics of tumour cells. Consequently, if the tumour attempts a resurgence, these well-prepared immune cells promptly recognise and eradicate it.

Additionally, these empowered immune cells can transmit their acquired knowledge to untrained immune cells throughout the body, forming a defensive army. This implies that even if tumour cells attempt to spread beyond their original site, these primed immune cells can detect and eradicate them, establishing a comprehensive body-wide defence against cancer. Cheng expects a human trial to launch in five years.

the-common-myths-outline-diagnosis-treatment-and-prevention-strategies-about-cancer

Sat Mar 30 14:47:11 IST 2024

According to the Global Burden of Disease study, cancer caused 8.3 per cent of the total deaths in India in 2016, almost double of what it did in 1990. As per the WHO Global Cancer Observatory estimates, 1.32 million new cancer cases and 0.85 million cancer-related deaths occurred in India in 2020.

According to the National Cancer Registry Programme, the most number of women with cancers are found in west India followed by the south. Northeast India reports the lowest numbers. Breast cancer is the most common cancer in urban India, while it is cervical cancer in rural India. The average age for women for these cancers ranges between 45 and 60 years. One in nine people in India is likely to get cancer, with women outnumbering men.

For this column, we delve into the complexities of cancer in Indian women.

Dr Mandeep Singh Malhotra is an oncologist with more than 20 years of clinical experience. Currently working as director, surgical oncology at CK Birla Hospital, Delhi, he completed his senior residency in the speciality at the All India Institute of Medical Sciences (AIIMS), Delhi. He has done stints at Broomfield Hospital, Chelmsford, UK, and the University of Pennsylvania, US. His various awards include the Young Scientist Award in 1992.

In layman terms: Cancer is a complex disease characterised by uncontrolled growth and division of abnormal cells. These cells originate within the body, not from external factors like bacteria, fungi, or viruses. Such growth disrupts normal cellular processes and can lead to the invasion of surrounding tissues and, in some cases, spread to other parts of the body through the bloodstream or the lymphatic system.

The speed of division: The development of cancer often occurs in cells that undergo frequent division, like the lining of the oral cavity, respiratory tract, gut (colon and stomach), and reproductive system (endometrium—the lining of the uterus). Additionally, blood cancers can arise from white blood cells and their precursor cells (cells that mature into functional forms). Frequent cell division increases the likelihood of mutations in the cell’s genetic code or DNA. These mutations can disrupt the normal control mechanisms that regulate cell growth and division, leading to uncontrolled proliferation and the development of cancer.

What causes mutations: Exposure to carcinogens (like tobacco smoke) and alcohol consumption can damage the DNA and increase the risk of mutations in cells lining the mouth, respiratory tract, and other organs.

Hormonal imbalances: long-term exposure to estrogen can contribute to breast and endometrial cancers.

Genetics: In some cases, cancer susceptibility is inherited from parents. However, most cancers are not directly inherited. Other factors are ultraviolet radiation, certain viruses, and chronic inflammation.

Most common cancers in Indian women: Breast cancer ranks as the most common, followed by cervical cancer. Both pose significant health risks, but ovarian cancer carries a notably higher mortality rate primarily due to late-stage diagnosis. Still, breast cancer remains the leading cause of cancer deaths as it accounts for more than a third of women’s cancer. Thus, while cancer-specific mortality (death rate) of ovarian cancer is more than breast cancer, the overall mortality of breast cancer is higher.

The age factor: For breast cancer, unlike in western countries, the average age for women in India is around 45 years, preceding menopause. This earlier age of presentation is a critical concern. Ovarian and endometrial cancers typically manifest after menopause, mostly beyond 50 years. However, younger cases are increasingly observed. Cervical cancer peaks in the 35 to 50 age bracket, particularly affecting women with multiple sexual partners, poor hygiene, and financial limitations. The nationwide HPV vaccination initiative promises a significant decrease in future cases.

The stages of breast cancer: It begins with stage zero which is detectable through screening methods like mammography, ultrasound, or MRI. Early-stage breast cancer is limited to the breast, with no involvement of the underlying chest wall or armpit nodes. Locally advanced breast cancer (stage 3) involves lymph node spread or larger tumour size, potentially with skin or chest wall involvement. Stage 4 breast cancer indicates spread of cancer cells (metastasis) to other organs like bones, lungs, liver, or brain. Treatment depends on hormone receptor status (whether or not cells have proteins that bind to a specific hormone). Hormone-positive cancers respond well to hormone therapy, while aggressive subtypes like HER2-positive (HER2 being a protein that promotes the growth of cancer cells) or triple-negative (which has neither estrogen nor progesterone or HER2, and thus gives doctors fewer treatment options) require targeted therapy or immunotherapy alongside chemotherapy. Treatment response significantly impacts cancer control, with favourable responses leading to better outcomes even in advanced cases.

The march of ovarian cancer: This may also begin as borderline ovarian lesions (damage) before progressing to cancer. Initial stages involve localised ovarian tumours, and then it progresses to adjacent structures like fallopian tubes or uterus, causing symptoms such as pain or urinary/bowel changes. Advanced stages spread throughout the abdominal cavity and potentially to distant organs like the liver or lungs. Treatment strategies involve upfront surgery for early stages and systemic therapy for advanced cases, with chemotherapy, targeted therapy, and immunotherapy showing promising results, especially in responsive patients. CA 125 (a kind of blood test) is a sensitive marker for monitoring response to treatment and detecting cancer recurrence post-surgery. Hyperthermic intraperitoneal chemotherapy (a two-step procedure where cancerous tumours are surgically removed, and then heated chemotherapy drugs applied directly inside the abdomen to eliminate the remaining cancerous cells) is a newer technique enhancing chemo effectiveness. It is particularly beneficial for aggressive cancers or those with good initial treatment response.

What to do before pain strikes: While pain often indicates advanced cancer, proactive measures and lifestyle changes can lead to earlier diagnoses. For breast cancer, Self-Breast Examination (SBE) is a valuable screening tool. Performing monthly SBE is crucial in India due to the younger onset age (45 years). Mammography may not be effective at this age. Additionally, schedule clinical breast exams by a health care professional every six to 12 months and enrol for screening mammography under the supervision of a family gynaecologist or physician. For cervical cancer, the HPV vaccine drastically reduces chances of getting it by 80 to 90 per cent. It also prevents oropharyngeal (head and neck) cancers in both men and women, and penile cancer in men. Women should also go for regular gynaecologist consultations and consider pap smears (that test cells from the cervix) every three to five years or HPV DNA testing. They should watch out for symptoms like post-coital bleeding and unusual discharge. Early symptoms of ovarian cancer are often vague, but watch for bloating, dyspepsia (indigestion), and increased abdominal girth. Advanced symptoms include urinary/bladder/bowel obstruction and pain. If there is a family history of ovarian cancer, consult your doctor for more personalised advice.

The rise of cancer kinds: Over the past few years, a significant shift has occurred. Cervical cancer, which once held the top spot, has been surpassed by breast cancer. Additionally, there has been a rise in both ovarian and endometrial cancers over the same period. However, a promising trend is emerging, with the increased uptake of HPV vaccination, cases of cervical cancer are falling by seven to 10 per cent.

Busting common cancer myths: Bras (underwired or otherwise) and/or deodorants do not cause cancer. Breast cancer risk factors are largely genetic and environmental, not related to clothing or hygiene products. The HPV vaccine might, like all vaccines, cause mild, temporary side effects like fever or soreness, but has no serious side effects. The benefits of the vaccine far outweigh any potential risks. Biopsy does not spread cancer, but is crucial for accurate diagnosis. It is a dangerous generalisation that any female problem requires a hysterectomy (removal of uterus). Treatment options vary depending on the specific condition and severity. Consult a qualified health care professional for an accurate diagnosis and appropriate treatment plan.

Mastectomy is not the answer: Modern surgical techniques allow for breast preservation while achieving excellent cancer control in many cases. It is now proven that women at early stage of breast cancer who survive the cancer with breast tend to live longer compared with those who have undergone complete breast removal (mastectomy). Talk to your doctor about the best option for your situation.

Chemotherapy not so unbearable: Modern chemotherapy has come a long way, with advancements in supportive care significantly reducing side effects. Hair loss and other effects are often temporary and reversible.

Immunotherapy not a replacement for chemotherapy: Immunotherapy plays a vital role in women's cancer treatment, but it typically enhances the effectiveness of chemotherapy, and does not replace it. Each therapy has its unique role and works best in combination with others.

Alternative medicines: While traditional therapies like ayurveda can offer benefits in managing side effects and promoting general well-being, they cannot cure established cancers. Standard treatments like surgery, radiation, and chemotherapy remain the cornerstone of cancer control.

The role of genetics and lifestyle: The dynamic nature of breasts which undergo constant changes from puberty through menopause, increases the likelihood of cellular abnormalities leading to cancer. Lifestyle and environmental factors—early puberty, delayed pregnancies, reduced lactation periods, stress, alcohol consumption, smoking, and exposure to pollutants play a substantial role in this surge. Obesity is associated with higher estrogen levels, which further increases the risk. Understanding the genetic aspect is crucial, as 15 to 20 per cent of breast cancers in India are hereditary.

Genomic alterations: Mutations in BRCA1 and BRCA2 genes (that protect against cancer) contribute significantly to cancer risk. Women with these mutations face a 70 per cent lifetime risk of breast cancer and a 45 per cent risk of ovarian cancer. Genetic counselling becomes imperative for those with a family history of breast, ovarian, prostate, colorectal, or other related cancers.

Prevention strategies: Focus on lifestyle modifications, stress reduction, exercise, a healthy diet, and timely family planning. Encouraging women to consider childbirth before the age of 35, prioritising fitness, and promoting adequate lactation can mitigate risk factors. The advent of assisted reproduction technologies, while aiding conception, introduces new considerations and trends, potentially impacting breast cancer incidence.

Family history: In families with a history of breast or other related cancers, consulting a genetic counsellor is a proactive step. Assessing risk through analysis and pedigree charts allows for personalised interventions, such as intensive screening or risk-reducing procedures like mastectomy, which can remarkably reduce the risk of breast cancer-related mortality by 95 per cent.

The (perceived) loss of looks and confidence: Hair loss is a side effect associated with chemotherapy used for various cancers, including those of the breast, ovary, cervix and endometrium. Counselling reassures patients that hair loss is temporary and hair will grow back. Depending on the patient's mental state and support system, the hospital may involve trained counsellors specialising in post-cancer support.

Because of advancements in oncoplastic breast conservation, 90 per cent of women undergoing breast cancer treatment can save their breasts. Robotic surgery allows for precise procedures with optimal functional breast preservation, including skin, nipple, and sensation. Traditional medicines like ayurveda and nutraceuticals can help reduce the side effects of chemotherapy and radiation. Medications like high-dose IV vitamin C may also be used to manage hair loss and other side effects. Modern chemotherapy regimens are optimised to minimise side effects while maximising effectiveness.

A matter of cost: It is a common misconception that cancer treatment is always expensive and unsuccessful. For cervical cancer, the HPV vaccine is more affordable due to government initiatives. Early detection of uterine cancers often only requires straightforward surgery, making it significantly less expensive than treating advanced stages requiring radiation, chemotherapy, and other interventions.

For hormone-positive breast cancer, the most common type in India, the basis of treatment is surgery and hormone therapy. Risk assessment can even identify patients who don’t require chemotherapy, further reducing costs. Hormone therapy itself is inexpensive. Only a specific type of breast cancer, HER2-positive, requires targeted therapy, which can be more expensive. However, the availability of biosimilars (medicines that are very similar to biologics, or drugs derived from living organisms or natural resources) in India has brought down the cost considerably. Even for triple-negative breast cancer, not every patient necessarily needs immunotherapy. While it can improve response rates, adding it increases the cost significantly. Standard chemotherapy alone delivers a 50 per cent response rate, and immunotherapy only increases that to 64 to 65 per cent. Therefore, most patients can be treated effectively with standard chemotherapy, with immunotherapy offering an additional benefit for those who can afford it. Early-stage cancer treatment promises an 80 to 90 per cent success rate, regardless of cost. The high expenses and disappointments typically arise when treating advanced stages, requiring multiple lines of treatment, expensive diagnostics, and advanced medications.

Family and Friends: Research has highlighted the important role of family and friends in supporting cancer patients. Studies show that patients with a strong support system and positive mindset tend to live longer compared with those lacking social support. Family support acts as a powerful boon in a patient’s fight against cancer. It not only provides emotional comfort, but also practical assistance with daily tasks and treatment adherence. Interestingly, research also suggests a link between stress levels and cancer risk. Patients lacking social support or experiencing loneliness and depression often exhibit higher stress levels. This chronic stress may be a potential factor in increased cancer risk.

Post-treatment life quality: Modern breakthroughs in science and technology have improved the quality of life for women undergoing cancer treatment, particularly breast cancer. Today, the mission is to ensure women remain as they were before treatment, both physically and emotionally. Techniques like oncoplastic surgery and robot-assisted procedures allow women to not just walk out cancer-free, but walk out with their breast shape, sensation, and function preserved, with restored normalcy and confidence. Researchers are working tirelessly to reduce the burden of treatment side effects like hair loss, pain, and skin changes. Innovative medications like targeted therapies and immunotherapies, alongside advancements in chemotherapy, have significantly increased response rates. Even during chemotherapy, doctors take precautions to ensure ovarian function and reproductive potential remain intact. Modern radiation therapy minimises undesirable effects like skin irritation and scarring, further enhancing quality of life. Early detection, coupled with these innovative technologies, ensures not just increased survival rates, but also an improvement in post-treatment quality of life.

Top cancer self-care tips: Embrace happiness. While I cannot say that happiness completely prevents or cures cancer, a positive outlook has a significant impact on your fight and recovery. Stay informed about symptoms and follow the doctor's instructions diligently. Attending all follow-up appointments is important. Recurrent thoughts of cancer can be overwhelming. Seek support and practise stress management techniques to keep anxiety at bay. While research on dietary specifics is ongoing, consider potential triggers and incorporate nutritious elements to support overall health. Consult a registered dietitian for personalised guidance. Shifting the perspective can be empowering. Instead of dwelling on the negative, view the journey as an opportunity for growth and self-discovery.

tb-eradication-in-india-by-2025-genome-sequencing

Sat Mar 30 14:40:36 IST 2024

Rohit Kumar had lost all hope. All anti-tuberculosis drugs had stopped giving results for the 23-year-old from Delhi. As a last resort, his doctor asked him to undergo genome testing. Kumar (name changed) was found to be multi-drug resistant (MDR). Fortunately, he had not reached the extensive drug-resistant stage. He was immediately put on a new drug regime and is now on the road to recovery. Like Kumar, there are several TB patients who are benefiting from genome sequencing, which helps to make the right diagnosis at the right time.

“Genomics is the future of effective tuberculosis diagnosis,” says Gunisha Pasricha, principal scientist, infectious disease expert, MedGenome, a genomics research and drug development organisation. “With advanced techniques like culture-free, whole genome sequencing (WGS), we are gradually progressing towards overcoming the challenges around accurate and timely diagnosis of tuberculosis.” As per a paper titled, ‘WGS of Mycobacterium TB Isolates from India’, published in Frontiers in Microbiology, “WGS of mycobacterium tuberculosis (MtB) has been constructive in understanding its evolution, genetic diversity and the mechanisms involved in drug resistance.” The study highlighted the immense significance of employing WGS in diagnosis as well as treatment.

Numbers, too, merit attention and call for timely interventions to stymie the endemic. As the world celebrated World TB Day on March 24, nearly 10 million people were estimated to have developed tuberculosis globally. In 2022, 1.5 million people died from it. India has the world’s highest TB burden, with an estimated 26 lakh people contracting the disease and approximately 4 lakh people dying from the disease every year, as per the Union government figures. In 2022, India accounted for the highest number of TB cases in the world, representing a whopping 27 per cent of the global burden, revealed the World Health Organization's Global Tuberculosis Report 2023.

A growing body of scholarship underscores that wrong dosage, poor quality of drugs and delay in diagnosis have precipitated India’s MDR TB epidemic. Out of 1.1 lakh cases, 63,801 were diagnosed with the MDR variant. Understandably, therefore, in recent times, experts have advocated the use of molecular diagnostics to treat the contagious disease, especially in the backdrop of MDR emerging as a major concern. The WHO, too, recommends molecular tests. The latest India-TB report, however, shows that the traditional culture-based sputum test continues to be the predominant method across the country.

Vinod Scaria, senior consultant, genome informatics and computational biology, Vishwanath Cancer Care Foundation, told THE WEEK that both diagnosis and treatment need to be kept in mind. “Tuberculosis is an endemic, but when it becomes active infection the problem arises and the big issue is resistance to drugs,” he said. “The culture-based (microscopic) methods are no doubt the gold standard around the world. But, there are limitations in the sense that they may or may not detect infections that are called extra-pulmonary in case of TB.” Scaria, who was part of Indian SARS-CoV2 genomic sequencing (INSACOG) project during his stint with CSIR Institute of Genomics and Integrative Biology, added that the solution to this problem was meta genome sequencing, which can identify and make information available holistically. “When it comes to treatment, in case of TB the conventional ways may miss the drug resistance markers available, delaying the diagnosis and the treatment,” he said. “By sequencing the entire genome, all markers will be covered and the exact causes can be learnt in much less time.”

Pasricha concurs. “The conventional techniques like liquid culture or solid culture will take more time to give results,” she said. “The molecular methods, on the other hand, sequence the whole genome and we have validated the tests within 14 days.” She further explained that culture-based WGS had proven effective in predicting drug resistance and providing insights into the genetic makeup of TB strains. However, culture-based WGS takes 10-12 weeks to determine the drug resistance susceptibility results of the sample. “WGS from direct sputum/clinical samples offers a solution,” she said. “Advancements in genomics have helped us address these issues, and today we have technologies like SPITSEQ, a culture-free WGS method that comes with 100 per cent sensitivity, 98.4 per cent accuracy in resistance variant profiling and 97.7 per cent accuracy with phenotypic drug susceptibility tests for at least six anti-tuberculosis drugs.” She admitted that although culture-based microscopic methods are the gold standard, the world is increasingly recognising the importance of next-generation sequencing. “We get a regular inflow of requests by doctors to perform WGS using new technologies,” she said.

The government also acknowledges the gaps. A senior official in the department of biotechnology, the nodal organisation sequencing more than 30,000 TB strains, told THE WEEK that there are at least two challenges in the current methods of surveillance of drug resistance in MtB. “Existing genetic testing for drug resistance picks only the known genes/mutations and because of the long doubling time of Mtb, traditional drug sensitivity tests are time-consuming,” he said. He added that this necessitates the development of novel technologies for rapid detection of drug resistance and identification of novel mutations. Developments in WGS technologies make it an extremely useful tool to address both these issues.

The government has initiated a slew of measures to combat TB. The campaign got a renewed push with the launch of Pradhan Mantri TB-Mukt Bharat Abhiyan in September 2022 which aims to eradicate TB by 2025. In fact, the reported increase in TB cases the same year were attributed to enhanced surveillance. According to the India TB report 2023, published by central TB division in the ministry of health and family welfare, the year 2022 marked a “milestone year for TB surveillance efforts in India, with a record high notification of 24.2 lakh cases, a 13 per cent increase from 2021”. This means a case notification rate of approximately 172 cases per lakh population. The highest notification was seen in Delhi (546 per lakh population) and the lowest in Kerala (67 per lakh population). Ni-kshay Mitras, Ni-kshay Poshan Yojana, TB Vijetas and TB Champions are some other initiatives of the government focusing on generating awareness on TB prevention.

To provide impetus to molecular testing, there was another initiative called the Indian TB Genomic Surveillance Consortium (InTGS) launched under the government's DARE2ERAD TB (data-driven research to eradicate TB) umbrella in March 2023. It was modelled on the lines of INSACOG, to monitor the genomic variations in MtB through a multi-laboratory network. The partners of this consortium are CSIR and the Indian Council of Medical Research (ICMR). As part of the initiative, the department of biotechnology plans to perform whole genome sequencing of 32,200 clinical strains from active TB patients.

Acknowledging the importance of WGS in TB, Union minister for science and technology Dr Jitendra Singh had said: “In order to fully understand the biological characteristics of MtB and the effect of the mutations on transmission, treatment and disease severity, analysing the genomic data of the organism is essential.” Singh admitted that WGS is increasingly gaining traction as an important molecular tool for TB surveillance. “InTGS is a first pan-India initiative at such scale to fully understand the biological characteristics and could lay the groundwork for use of modern technology such as WGS for TB diagnosis and surveillance in future,” said Singh.

  Dr Rajendra P. Joshi, deputy director general, central TB division, wrote in the 2023 India TB report that under the national tuberculosis elimination programme, 4,960 nucleic acid amplification test machines have been deployed across the country for rapid molecular diagnosis of TB to ensure early and complete case finding.

However, observers feel that the pace at which India is performing WGS on TB strains may not be enough to achieve the TB-mukt target by 2025. The numbers attest to the pessimism. In March 2023, the Union minister declared the commencement of the pilot phase of InTGS with successful completion of whole genome sequencing of 182 strains isolated from TB patients. In nearly a year since then, the sequencing has been completed for only 513 strains, as per the recent data provided to THE WEEK by the department of biotechnology.

“The reason behind the slow progress is the reluctance of the government to rope-in the private sector,” said an expert, on condition of anonymity. “While the government may take years to perform WGS of 32,200 TB strains, the private sector is capable of doing the job within 3-4 months. In case of Covid-19, the government opened up the testing of RT-PCR by the private players. This resulted not only in reduced cost of the test but also in availability of early reports. The molecular tests were extensively used for Covid-19 detection and they can be re-purposed for TB diagnostics to eradicate the disease by 2025. It is surprising why the government is not doing it.” The apprehension of experts is not misplaced. The organisations chosen for the execution of InTGS are all government agencies. Whereas sequencing will be performed together by BRIC-National Institute of Biomedical Genomics, Kalyani, CSIR-Centre for Cellular & Molecular Biology, Hyderabad, and ICMR-National Institute for Research in Tuberculosis, Chennai, a bio-repository for TB strains is being established at International Centre for Genetic Engineering and Biotechnology, New Delhi.

For data analysis and storage, National Institute of Immunology, New Delhi, and Indian Biological Data Centre, Faridabad, have been given the responsibility, respectively.

The chorus is growing for strengthening access to WGS TB services, improving surveillance and drug resistance management besides investing heavily in R&D, as explained in a recent paper titled, ‘Genomic revolution: Transforming TB diagnosis and treatment with the use of WGS’ published in the Indian Journal of Tuberculosis.

For India to be TB-mukt by 2025, it will have to make rapid strides in using whole genome sequencing to its full potential. Said Pasricha: “Public private partnership is very important so that all go hand-in-hand to eradicate TB from India.”

link-between-prenatal-maternal-inflammation-and-depressive-symptoms-in-adolescent-offspring

Sat Feb 24 17:16:30 IST 2024

An estimated 280 million people worldwide suffer from depression, a condition influenced by a complex interplay of social, psychological and biological factors. Those who have experienced adversities such as unemployment, loss or trauma are at higher risk. A comprehensive review, from 2001 to 2020, revealed that 34 per cent of adolescents aged between 10 and 19 reported elevated depressive symptoms globally, with the Middle East, Africa and Asia showing the highest prevalence. Notably, female adolescents exhibited a higher prevalence than males.

Depression in adolescents stems from various factors including genetics, environment and social circumstances. A recent study in JAMA Psychiatry delved into a novel link between prenatal maternal inflammation and depressive symptoms in adolescent offspring. The research, examining 674 mother-offspring pairs, focused on those who received obstetric care from June 1959 to September 1966. This study unveiled sex-specific pathways from prenatal maternal inflammation to adolescent depressive symptoms.

Data on pregnancy and blood sera were collected from mothers, with psychiatric symptom data gathered from offspring during childhood (ages 9-11 years) and adolescence (ages 15-17 years). Maternal prenatal inflammatory biomarkers, indicative of inflammation during pregnancy, were assessed during the first and/or second trimesters. These biomarkers, measurable in blood or other bodily fluids, offer insights into the presence and severity of inflammation in the body. Maternal inflammation during pregnancy has previously been linked to adverse neurodevelopmental outcomes in offspring, such as autism spectrum disorder, attention deficit hyperactivity disorder and Tourette syndrome.

The study revealed a significant association between higher levels of interleukin 6 (IL-6), a specific type of inflammation, during the second trimester of pregnancy and increased depressive symptoms in adolescent offspring. Notably, in male offspring, the analysis indicated that childhood externalising symptoms played a significant mediating role in the link between IL-6 levels in the first trimester and adolescent depressive symptoms. Childhood externalising symptoms encompass a range of problematic behaviours directed outwardly towards others or the social environment, including hyperactivity, impulsivity, aggression and rule-breaking. The observation suggested that the impact of maternal inflammation on offspring depressive symptoms is influenced by the child's behaviour during childhood and the timing of maternal inflammation during pregnancy. In female offspring, it was observed that childhood internalising symptoms mediated the link between second-trimester IL-1Ra (natural anti-inflammatory factor) levels and adolescent depressive symptoms. Childhood internalising symptoms encompass various emotional and psychological challenges directed inwardly towards the individual, including anxiety, somatic complaints and withdrawal.

These findings indicate that the influence of maternal inflammation on offspring depressive symptoms is shaped by the child's gender and the timing of maternal inflammation during pregnancy.

ending-period-related-stigma-and-discrimination

Sat Feb 24 17:28:29 IST 2024

I was nearly 12 when I first got my period. My mother had recently relocated to Mohali for work and at the time it was just my father, older brother, grandparents and I in Delhi. I remember seeing bloodstains on the bed sheet and running straight to the bathroom. My father must have seen the stains, too, as a few minutes later my grandmother knocked on the bathroom door and told me to throw my clothes in for washing and take a shower. I do not remember being scared, just uncomfortable. Very uncomfortable. When I came out of the shower, my father handed me a sanitary pad and told me that I would have to use it for a couple of days. He showed me how to open it and where it goes and then I was off to give it a go. The next morning while getting me ready for school, he said, “You might feel eager to tell your friends but please do not tell everyone that you are wearing a pad.” He must have known me pretty well as the first thing I did once I got to school was telling my closest friends that I had gotten my period!

Years later, my mother would tell me what had transpired while I was in the shower. My father rang my mother and told her that I had got my period. She instructed him to go to the pharmacy and get some sanitary pads. In the meantime, he told my grandmother to help me get cleaned up. When my mother came home the next weekend, she made sure I got to spend enough time with her to get all my doubts cleared, including how I thought a sanitary pad was just an adult diaper for women who went to work (and who can blame me, haven’t we all seen the sanitary pad commercials with the blue liquid!).

This has remained a key positive memory of my life. But as I grew older, I realised that not everyone’s memory of how they got their first period was a pleasant one.

Every month, 1.8 billion people across the world menstruate. Millions of these girls, women, transgender men, and non-binary persons are unable to manage their menstrual cycle in a dignified or healthy way. In India, there are more than 35.5 crore menstruating women and girls, and many of them, especially those living in rural areas, face several challenges because of their menstruation, which restricts their autonomy and agency.

Menstrual hygiene remains a pressing issue in India, and a pervasive lack of awareness compounds it. For instance, research has indicated that anywhere between 29 per cent and 71 per cent of girls in India have no prior knowledge of menstruation before experiencing their first period. Cultural taboos and social stigma continue to negatively impact the menstruation experience. A national survey found that 70 per cent of girls in India perceive menstruation as “dirty”, while over 30 per cent experience fear and anxiety because of societal taboos associated with menstruation. Lastly, access to affordable and hygienic menstrual products remains a significant barrier. According to the National Family Health Survey (NFHS-4), only about 58 per cent of women in India aged 15 to 24 use hygienic methods of menstrual protection. Many girls drop out of school and several others are excluded from participating in everyday spheres of life.

It is important to look at menstrual health and hygiene as a basic human right. In fact, there are existing human rights that include obligations related to menstrual health and hygiene. For instance, the right to equality and non-discrimination, gender equality or the right to health, education, water and sanitation. Furthermore, there is a greater emphasis on the interconnectedness of these issues under the umbrella of climate change and sustainable development as outlined by the UN Sustainable Development Goals. We know that women and men experience climate change differently. Based on the findings of the Intergovernmental Panel on Climate Change, it is clear that people who are already among the most vulnerable and marginalised will experience the greatest impacts of climate change.

With that in mind, I undertook a project on menstrual health in Uttarakhand from an intersectional gender and climate justice lens. It was a collaborative effort that was supported by Sheffield Hallam University of the UK; The Sidhast Foundation, a local NGO; Pink Leaf, a sanitary company started by two young men; the Almora chief medical officer's office; and the local panchayat. Participants were local village women and girls, as well as two government self-help groups. The workshop, led by two young female doctors from the local hospital, was aimed at creating awareness about the importance of menstrual and reproductive health and hygiene. After the lunch break, we moved on to the focus groups.

I truly believe something powerful happens when a group of women sits together and shares stories. And that is exactly what happened when we began the focus group. Everyone jogged their memories to remember their first period, which instantly opened a portal to deep and meaningful experience-sharing. The accounts of challenges made me reflect on my own Kumaoni identity and how different my experiences were growing up in a city. Women recalled not receiving proper information about periods, not having access to sanitary products, being denied access to the kitchen, and not sleeping in the same bed as their husbands. However, these were not lamenting narratives and were often balanced with a lot of laughter and giggles. But that was not surprising given the history of resilience shown by pahadi women in fighting the harsh elements of nature, resisting many unsustainable practices of modernisation as well as battling alcoholism among the men. We were lucky to hear narratives of women from across three generations of a family. While the grandmother recalled facing stigma around menstruation, the daughter recalled resisting many such unfounded taboos. Finally, the granddaughter shared how she does not feel restricted during her period and is able to actively engage in all her day-to-day activities. Many women also recalled segregation being common practice during periods and how they want to ensure their daughters and daughters-in-law do not have to go through similar unjust and discriminatory practices. It was interesting how many women shared that their husbands also condemned these ideas.

It was clear that things were slowly changing. Many women were still using cloth pads but were open to switching to reasonably priced, good-quality sanitary products. They were aware of the government-provided sanitary pads through anganwadis but felt that the quality was not good enough to make the switch. As the women and girls of the region are historically known to have sustainable practices, an important conversation about waste management also emerged. The need for biodegradable products and an effective way of disposing them seemed imperative. Another key point was focusing on efforts towards educating boys and men about menstrual health and barriers to gender equality.

The aim of the International Women’s Day 2024 #InspireInclusion campaign is to collectively forge a more inclusive world for women. But this world cannot be forged without support from men, who need to be reminded that they are equal stakeholders in this mission. A gender-equal world benefits all. UN agencies have stressed that if gender quality is not achieved, the implementation of all other goals would be compromised.

On March 8, 2020, Shashi Tharoor, MP, had started a conversation on menstrual health when he tweeted a petition advocating for menstrual leave for women in public and private workplaces. In March last year, Kerala MPs T.N. Prathapan, Benny Behanan and Rajmohan Unnithan posed questions in the Lok Sabha on whether the government had considered making provision for paid menstrual leave mandatory for all workplaces. More recently, Union Minister Smriti Irani came under fire when she made a statement in Parliament on how menstruation is not a handicap, and that the government is not coming up with any policy for mandatory paid period leave.

While all these debates contribute towards a healthy discourse on menstrual health, perhaps the priority needs to be directed towards the grassroots level. For instance, a recent study conducted by the Population Research Centre, Patna University, found that about 40 per cent of rural female adolescents in Bihar use cloth instead of sanitary napkins, and that even among the girls who use the latter, 90 per cent had not received any government-supplied napkins in recent years. And let us not forget this is a state that introduced menstrual leave of two days all the way back in the 1990s. The study also revealed that at least 5 per cent of the girls were not allowed to take bath during their menstruation.

In India, there are various policies and schemes aimed at promoting accessibility to menstrual products and sanitation infrastructure. Among these are the National Menstrual Hygiene Scheme, Menstrual Hygiene Management Guidelines and the Swachh Bharat Mission.

However, more concerted efforts need to be made in educational and awareness-centred campaigns keeping regional complexities in mind. This is not only the responsibility of the Union and state governments, but also every one of us. So, this International Women’s Day, I call to action boys and girls, men and women to be agents of change and promote inclusion by ending period-related stigma and discrimination.

Dr Madhumita Pandey is senior lecturer in criminology and the Gender-Justice Hub lead at the department of law and criminology, Sheffield Hallam University. She works in the area of sexual offence, sex offenders and violence against women, particularly focusing on rape, in the global south.