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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.”

working-towards-realistic-treatment-option-for-dmd-says-expert

Sun Sep 04 13:44:56 IST 2022

When was DART established?

In 2012 with the idea of initiating research leading to treatment that would provide support to children affected by DMD (Duchenne muscular dystrophy) and their families.

What is the role of DART in DMD research? What scientific strides have happened in recent years, with respect to finding a cure or treatment?

DART is the first research laboratory in India focusing on DMD research. We are working towards a realistic treatment option to alleviate and reverse the dystrophy condition at the genetic level, thereby enhancing the quality of life of affected children. The research programmes have been partially funded by state and Union government agencies, including ICMR (Indian Council of Medical Research).

DART is a DSIR (department of scientific and industrial research, Union ministry of science and technology) recognised research lab. In February 2017, Hanugen Therapeutics was started as a spin-off of DART with the aim to make the skills and technology of antisense oligonucleotides (AOS: small pieces of DNA that can modify the production of protein by cells) available to those suffering from genetic disorders.

Currently, Hanugen Therapeutics has obtained the manufacturing licence from the Indian Drug Licensing Authority for the upcoming clinical trials of DART.

What is the strategy behind the process of exon-skipping?

In human genes, there are non-coding sequences (introns) and the protein coding sequences (exons). In patients with disease-causing mutations, skipping or masking the non-functional exons can work to establish a situation where cells can produce a shortened but functional form of the dystrophin protein (which is deficient or undergoes mutation in DMD).

An estimated 80 per cent of DMD patients have genetic mutations (alterations in gene) that are amenable to exon-skipping.

In DMD, an exon or exons are deleted. This interferes with the rest of the gene being pieced together. For the dystrophin protein to work, it must have both the ends of the protein. Hence, whenever there is a mutation, it results in a completely non-functional dystrophin protein and severe symptoms of DMD.

In exon-skipping, AOS are used to mask the exons that need to be skipped.

In the future, the targeted next generation sequencing (NGS) may become a single platform to detect all types of mutations in the DMD gene. NGS could provide precise genetic information for emerging gene therapies.

(DART was founded by Movin Anand and Ravdeep Singh Anand whose son Karanveer Singh is afflicted with DMD. Karanveer, 22, is wheelchair-bound. He is currently pursuing his Bsc.)

hookup-lie-and-stinker

Mon Aug 01 12:07:54 IST 2022

Why do people join dating apps? To find a romantic partner? For casual hookups? A rebound relationship? Plain distraction? Or, to fill some gaping void?

For 35-year-old Sreejita Basu, a Delhi-based communications professional in the development sector, it was simply a sense of curiosity to see what was out there. While waiting for a Delhi-bound train to arrive at Pushkar station at the end of her solo trip in May 2018, Basu downloaded OkCupid on a whim. She had heard her friends rave and rant about apps like Tinder and OkCupid. But after Basu's long relationship had ended in 2016, she did not take recourse to a dating app like a painkiller or a heart replacement therapy. Instead, she took a year and a half off to coast around on her own, quietly recovering in the company of people, places and things that gave her joy. So when she finally did download a dating app for the first time, Basu did not want, need or expect anything to happen. “I had good conversations and the men I met were all decent. No one acted like a creep or a stalker. My husband was the third guy I spoke to and met,” recalled Basu, who married Saurav in a lockdown wedding in November 2020. “I spent a good deal of time focusing on my life. And the apps worked more like a confidence booster before I met the right one.” Her age with its attendant wisdom in priority-setting also helped her attract the right person, she added.

Basu's happy happenstance on a popular dating app, however, is hardly the norm. Of the several respondents THE WEEK spoke with to gauge levels of satisfaction on dating apps, more than 80 per cent attested to being unhappy, tired, cynical or sad. The pandemic surely added wings to online dating. According to research firm Sensor Tower, use of Tinder, Bumble and Hinge together grew by 17 per cent in January 2022 when compared to 2019, and first-time downloads grew from 91 million in 2019 to 106.4 million in 2021. Research will also tell you how more and more parents now approve of their children finding partners on dating apps. But precious little has been studied to understand the negative health impact born out of a culture of “choice overload”, “over abundance”, and “unlimited swipes” that dating apps engender. And how it breeds a “rejection mindset”, leading to swipe fatigue and dating burnout. A 2019 study in the journal Social Psychological and Personality Science found that more profiles, more searching, more scrutiny and a reluctant satisfaction with the final choice has often led people to gradually “close off” to mating opportunities.

In the March 2022 issue of the peer-reviewed journal Body Image, the authors of a paper titled ‘Love Me Tinder: The Effects of Women’s Lifetime Dating App Use On Daily Body Dissatisfaction, Disordered Eating Urges, And Negative Mood’ paint an unflattering image of mate-selection strategy via dating apps, which kicks off an endless cycle of hope and hurt. One-third of the participants from close to 300 women from age 18 to 48 offered a link between lifetime dating app usage and daily urges for binge-eating or purging and negative mood.

The reason why we are quoting research from the west is because it has wisened up to the ways in which dating has ushered in a strange anti-utopia for seekers of romantic or real human connections. Dating is something we have imported from the west (especially with the coming of Tinder), like several other lifestyle choices. And while we can only be thankful that these apps exist in the way it allows us encounters worth remembering, few are talking about the way it affects our brains, bodies and behavioural patterns with prolonged use.

“I call it Big Dating because it’s like Big Pharma in the sense that they’re more interested in selling you pills than curing what’s really wrong with you,” said Nancy Jo Sales in a Vox interview last year for her memoir—Nothing Personal: My Secret Life in the Dating App Inferno. “Dating happens 24/7 now, whereas there used to be times when we dated,” she said.

Sraboni Bhaduri, a Delhi-based psychologist, said that dating apps work more like “arranged marriages on steroids”, in the way it perpetuates a highly evaluative culture, with women and people from the LGBTQIA+ spectrum facing its worst pitfalls. “Our societal structure is a disaster right now,” she said. “People are not meeting each other situationally or running into each other the way they used to. Work is remote or hybrid, there is hardly any catching up over drinks after work or hanging out without an agenda. Normal friend circles are disrupted. And then dating apps make you market yourself in a way that you get chosen by someone on the basis of pictures and profiles. What does that do to your self-worth? It is a recipe for disaster, heightening feelings of stress, anxiety, loneliness. The very problem it seeks to solve is intensified.” Most people join dating apps at a moment of crisis in their lives, said Bhaduri, when something is not going right or one wants to break out of a toxic thread for a fresh start. “Women who are not so conventionally attractive will go out of their comfort zone to keep a date going,” she said. “They give in to men who might simply be predators. The result is a lot of casual, unprotected sex. These inexperienced, idiotic sexual encounters usually end up quite badly, including transmission of diseases. I know of cases, for both heterosexual and gay couples, where a bout of app-facilitated rough sex needed urgent medical attention.”

For women in smaller, tier-2 cities, matches do not go beyond a few chats. Antara Jha from Ranchi got on Tinder and Bumble to look for a like-minded friend after her marriage fell through the cracks. “But I would only come across men who wanted to know your ‘stats’; they would keep insisting on meeting without forming any connections,” said Jha, who then switched to an app for extramarital affairs to find a friend.

Two years ago, Abhishek Ghosh, a 27-year-old art consultant from Kolkata, was exceedingly happy to have landed in Delhi for work. Always keen on finding a job in Delhi, his short visit occasioned several networking opportunities. “I was also hoping to find better quality matches on Grindr (a social networking app for gay, bi, trans, and queer people). The dating pool for queer men in Kolkata leaves much to be desired,” said Ghosh, who continued to chat with matches in Delhi without intending to really meet anyone. He was happy socialising with friends and industry folks and spending his evenings exploring the city’s dining scene. But on the last day of his stay, he couldn’t resist and invited a rather good-looking man he had been chatting with to his boutique hotel in south Delhi. “I really wasn’t expecting him to show up on such short notice,” said Ghosh. “But he did and rang the bell in my room. When I opened the door, I found a completely different man who did not look like anything in the profile picture. He was middle-aged with a paunch and an unshaven face. He tried to forcefully enter my room. When I resisted, he fished out a knife from his pocket. That day I lost the 04,000 I had in my wallet and an expensive watch I was wearing. I could not call for security, fearing my identity as a gay man would be revealed to everyone in the hotel.” Ghosh left for a meeting with a client with a straight face immediately after. Back in Kolkata, he couldn't sleep for weeks before he sought help from a therapist and friends.

While dating applications have been a boon for same-sex couples in the way it allows exploration of intimacies in complete privacy, it can also be a bewildering, terrifying ride. Arjun Chandra, an advertising professional in Gurugram, found his partner on Hinge after years of trial and error on dating apps. He lists the number of ways he has been shortchanged. “I met a married man who wanted to have some serious BDSM style sex; another time I met a lesbian faking to be a man so that she could marry me and we both could live our own lives once married; the number of times I have been asked to pay for sex on these apps and the number of times I have been told to do drugs,” recalled Chandra. The way these social apps allow us to be whoever we want to be always acts as a double-edged sword, he said.

Informal dating relationships which end abruptly without any intimation, explanation or closure is called ghosting. It has variations like icing, simmering and bread-crumbing—all pointing towards sporadic, intermittent interest and disappearance. Ghosting is the most commonly cruel aspect of dating apps. Seema Hingorani, a Mumbai-based psychologist and relationship expert, said the lack of closure that comes with ghosting has become a bane of existence for young dating individuals. It goes on to trigger traumatic memories of childhood experiences and related attachment injuries. “Repeated ghosting can lead to a unregulated nervous system, where one loses control over their emotions—they can't focus at work or sleep at night, they don't eat well and have bad headaches,” she explained. “I had a client who literally had large chunks of hair falling off her head because of the stress that came with not being able to find the right match or running into people who could not commit.” The only protection one can have, according to Hingorani, is to be mindful of red flags from the start, because they are always there. “And you need to decide if you are looking for a date or a parent on these apps. Because parental issues and subsequent flawed belief systems from childhood first need to be resolved with a therapist,” she said.

Debanjan Banerjee, consultant psychiatrist, Apollo Hospitals, said that to understand how dating app addiction exactly affects the brain, we need three types of investigation. It can be obtained either through imaging—CT or MRI—or we need a neurophysiological study to measure blood pressure and heart rate variability, or an electroencephalogram (EEG) to track sweating and adrenaline rush. All of this entails putting electrodes on to an individual in a controlled environment which will violate the privacy one requires to form an emotional or intimate connection. And that is an obvious bias. But there is, in fact, sketchy data on how the gamification of dating apps gives us the unexpected, dopamine hit, said Banerjee, formerly with the National Institute of Mental Health and Neurosciences (NIMHANS). “There is an unpredictable reward in dating apps. So that unpredictability can actually hit your brain with a significant amount of adrenaline and dopamine,” he said. “So if someone is suddenly using, let's say Tinder, when they are sad or lonely or just bored, and they find something even for a few days, the experience is like a vodka shot or a snort of cocaine. This unpredictable hit to the brain is the same as a rapid rush of substance when the reward pathways of our brains are activated.”

Banerjee pointed to a recent study done at the Donders Center for Cognitive Neuroimaging in The Netherlands on the science behind brain activity while using Tinder. It specifically situates all the action in nucleus accumbens, an area in the brain which is most actively engaged in reward processing, especially while flipping through attractive faces. And the paper argues that the principle on which Tinder really operates is much like a casino slot machine. “Because you never know when you will hit the jackpot or when it will be a loss,” noted the paper.

Shreya Banerjee, a 32-year-old research professional, logged out of dating apps just before the pandemic started. Disappointed and disheartened, she reached out to old friends, family members and neighbours for shooting the breeze. “I didn't want to make cursory connections or flirt on apps,” she said. She continues to meet people the more old-fashioned way. But she knows there is no way out of apps. “Can you really blame the intention of technology for bringing people together?,” she asks. “We live in an unhealthy age where no one owes each other anything, be it an apology, an explanation or a decent farewell. The apps can add multiple filters to offer the perfect match, but how will they regulate human nature?”

how-an-indian-woman-revolutionised-the-way-couples-hook-up

Sat Jul 30 16:12:05 IST 2022

The place is anything but romantic: a tinted-window skyscraper rising among highways bordered with malls in Dallas, the business capital of Texas. Yet it was there, on the 15th floor, that Shar Dubey decided on the sentimental and sexual lives of a growing part of the planet.

When we met her in mid-January, she was the CEO of Match Group, which owns Tinder and another dozen dating apps including Meetic, OkCupid and Hinge. (She stepped down in May after two years at the helm, but continues to be director and adviser.) That Friday, Dubey had been hustling on her standing desk since 8am, following a video conference at 6.30am with the Korean teams. These early morning slots are necessary for the 52-year-old: her company revolutionises the way couples get together not only in the US but also in Europe and Asia. According to the analytics firm data.ai, Match Group is ranked second among mobile app editors whose users spend the biggest amount of money in the world after Google and before Tencent, video games aside.

The leader in online dating has grown considerably since the 1995 launch of the Match.com website. These past five years, its income rose from $1.3 billion to $3 billion in spite of Facebook’s entry on the dating market in 2018. But the group remains more private than other tech giants. So does Dubey: she has no Twitter or Instagram accounts.

Dubey is also wary of the Californian habit of letting societal debates infiltrate the company. Last fall, she nonetheless spoke up to denounce the new Texan law that bans abortion after six weeks by creating a fund to cover the expenses her female employees might have to pay if they abort in a different state. “I am not an activist and I don’t think it is usually the CEO’s job to take political stances. But I was asked what I think of this law and I couldn’t imagine replying ‘no comment’,” she says.

Dubey, however, doesn't hesitate to share her career history and the obstacles she faced because of her gender. Raised in Jamshedpur, by her father—an engineering school professor—and her stay-at-home mother, she was the only woman to be accepted at the Indian Institute of Technology (IIT) among a hundred male students. “My father was delighted that I got into the IIT, but in my distant family the first reaction was to tell me no one would marry me,” says Dubey.

She then flew off to pursue a masters at Ohio State University and she became the first woman engineer and the first foreigner to be hired by a Pennsylvanian aerospace manufacturer. “Many employees had been there for years when, suddenly, this girl with a thick accent turned up and told them what to do,” she recalls. Dubey is working on her accent by watching tons of sitcoms, and to fit in she shortens her first name from Sharmistha to Shar.

At that time, she was dating a former co-worker from India who had also moved to the US. “It was the first time someone married for love in my family,” she says.

When Mandy Ginsberg called her in 2006 looking for someone to manage Chemistry, the second brand launched by Match.com to compete with eHarmony, Dubey had never laid a finger on a dating website. And yet she decided to apply. She got along well with Ginsberg, whom she had met while working for a supply chain software producer. They formed a duo that would last for almost 15 years and transform the company. “It became obvious that Shar had some sort of magical comprehension of monetisation and of its balance with user experience,” says Ginsberg. She chose Dubey as president when she became CEO in 2017.

The Texan group transformed itself to address people of every age and demographic category. “The idea is to exploit the users’ earnings for a long time: young people start with Tinder, move on to Hinge, then Plenty of Fish, then Match and OurTime,” says Jason Helfstein, senior analyst at Oppenheimer & Co. The company also rides on the rise in divorces: “The average relationship lasts eight years in the US and in Europe. If our apps work out the first time, the user will come back,” says Match Group Americas CEO Amarnath Thombre, who also graduated from IIT.

In 1999, Match Group was bought by the holding company IAC. Ten years later, Match Group bought People Media and its 27 targeted dating websites. These brands are now outdated but the segmentation strategy still prevails on the US market. In the last four years, Match Group created BLK for African Americans, Chispa for Latinos and Upward for Christians. Match then bought the French group Meetic, which allowed them to extend their markets to Europe, and OkCupid, a popular startup among hipsters.

“The first generation of apps was closer to the way arranged marriages work, that is you think you know what you’re looking for,” says Dubey. “But it often turns out to be wrong: on our platforms we have the advantage to see that even if you say you like tall men, that is not such an important criteria for you.”

While Match, Chemistry and Meetic required payment to send a message, OkCupid and Plenty of Fish (bought in 2015) innovate with a freemium model: sending messages is free, but users have to pay for certain features. This model boosts these websites, notably for young people, erasing little by little the “loser” image associated with using them.

“The internet has become the most popular way for heterosexual couples to meet in the US, even ranking better than mutual friends for the first time in 2013,” says sociologist Michael Rosenfeld. The use of dating apps has increased since. “When I first started at Match.com, 3 per cent of marriages in the US were born from an online encounter. Today it’s 40 per cent,” says Hesam Hosseini, CEO, Match and Match Affnity.

The use of dating websites is also developing outside of the west: Japan became Match Group’s second biggest market after the US two years ago, after the acquisition of the wedding-focused app Pairs. “Japan has a declining population and a Loneliness Ministry, to such an extent that the government is beginning to consider dating apps as a solution,” says Match Group Asia CEO Alexandre Lubot.

And the pandemic sped up this process: “In the post-Covid world, the places where you’d meet people physically have disappeared. After #MeToo, it has also become harder to meet people at university and at the workplace,” says Dubey.

Jessica Pidoux, a postdoctoral researcher who wrote a thesis about dating apps, says that the Tinder mindset is exporting itself beyond smartphones. “People evaluate others in an algorithmic manner, saying whether they like someone or not very early on,” she says.

Tinder did change it all. The app was created in February 2012 by entrepreneur Sean Rad and the developer Joe Muñoz. It was free and inspired by Grindr, the 2009 dating app for LGBTQIA+ men which switched complex questionnaires for a higher focus on pictures. But Tinder added the “double opt-in”, the need to mutually swipe right to start a conversation. “Tinder’s big input is that it solves the problem of rejection,” says Dubey.

A decade later, Tinder has become Match Group’s driving force: the app generates 55 per cent of its sales revenue against 31 per cent five years ago, thanks to a threefold increase in the number of users—now more than 10 millions.

Dubey strongly contributed to the transformation of the startup into a cash machine. In 2017, she travelled every week to Los Angeles to launch Tinder Gold, a paid feature that allows users to know who swiped right on you, inspired by Who Likes You on OkCupid. “This company knows how to take a brand’s best recipes over to another one,” says Helfstein. Since 2015, Tinder had already limited free swipes to 50 a day per person, offering a paid subscription to those who would want to go beyond that limit, and the possibility to buy 30-minute profile “boosters”.

But Tinder Gold takes monetisation to the next level, with prices of over 30 euros a month. The company launched an even more expensive formula last year and does not plan on stopping there. “Most of the monetised functionalities that we have created until now aim to render male users’ experience more efficient, since they do not want to be restrained by a certain number of swipes,” admits Dubey. “One of the things we are working on is finding what we can offer to make women pay, like getting a better control of who they see and who can see them.”

Romantic people are protesting against this transformation of the quest for love into a supermarket where everyone is pitted against thousands of others. And many users feel like the algorithm puts them at a disadvantage. In 2019, journalist Judith Duportail found a patent mentioning a “desirability score”: if someone with many likes swipes right on your profile, you will get more visibility. Tinder assures it doesn’t use this system anymore, but has never explained what it replaced it with.

“Algorithms are not very smart, but they improve with the time you spend on the app, and what you do on it. On Hinge, if you keep liking pictures of people in nature, we will deduce that you are more attracted to this kind of people,” says Thombre. Hinge is Match Group’s new gem. Dubey says it is “about to become the second biggest dating app in the world in a few years”.

Thombre orchestrated the buyout of Hinge in 2017. Here, people who are interested in someone can only contact them by giving short answers to three questions or liking their pictures, so they can break the ice more easily. Hinge only exists in English for now, but the platform counts 8 lakh users and its sales revenue increased sixfold in three years.

Newcomers in the dating app market are “limited by the more important companies’ possibility to patent popular functionalities,” says lawyer Evan Michel Gilbert. Before Match Group tried to buy out Bumble, the company had sued its rival for infringing their “swiping” patent. They also sued Muzmatch, a dating app for Muslims, for the same reason, as well as for also using “match” in their name.

“We only sue other companies to preserve our brand and our patents,” says Dubey. She prefers talking about her efforts to remain at the forefront of innovation, her new mission being to “make sure users do not pick someone merely because of a picture”.

Last October, she launched Tinder Explore, a tab giving access to interactive experiences. Last year, she also bought Hyperconnect, a Korean company with a strong interest in the metaverse. “They launched a beta experience in Seoul, Single Town, in which your avatar can go to clubs or to the beach and make unexpected encounters,” says Dubey.

Flirting may have disappeared in real life, but Match Group is desperately seeking to revive its appeal.

how-myra-saad-and-brian-mccarty-use-art-to-heal-children-in-war-affected-areas

Fri Jun 24 17:50:20 IST 2022

Myra Saad was born when her country, Lebanon, was in turmoil. “We lived amid conflict, with fear of bombs and tanks and shootings,” says Saad. Today, she is helping children affected by war with art therapy. “It can heal the trauma that generations have felt and also promote empathy,” she says. “Those are the best ways to prevent another war.”

Saad—who holds an MA in expressive therapies with a specialisation in art therapy and mental health counselling from Lesley University in Cambridge, Massachusetts—first came in touch with California-based photo artist Brian McCarty in 2014. The latter had been documenting the stories of children from war zones through his toy photography for a few years. Since then, the two have collaborated to heal war-affected children and have helped articulate their stories. “The idea of working with children from conflict zones and collaborating with them through an art-based process for developing a photo series germinated after I made a trip to Croatia in 1996. It was in the aftermath of the Croatian war of independence,” says McCarty. “[I realised that] it is important to make people share their stories with their children, with the next generation, to stop the cycle of violence. Over the next 15 years, I learned about art therapy and play therapy, and formulated a project to gather the stories of children and articulate them through locally found toys.”

McCarty worked in the toy industry, with top brands like Mattel, Hasbro, Disney and Nickelodeon, and simultaneously fine-tuned his war idea taking guidance from art therapy experts like Judy Rubin and Julia Byers. In 2011, he started the 'War Toys' series. Three years later, he met Saad, who, in McCarty’s own words, had a “unique skill-set” for healing children.

“Over the past eight years, Saad and I have developed a methodology that works,” says McCarty. “And we have travelled to war-torn countries like Iraq and worked with children who have been displaced. We meet them at UNHCR (United Nations High Commissioner for Refugees) camps or schools or whatever had been set up to support them. We assemble groups of 10 to 15 children, and conduct what Myra calls ‘art-based interviews’. However, we are careful not to call it ‘art therapy’. Therapy happens over multiple sessions over multiple visits. And that is not something we have had the budget or resources to do very often.”

Both Saad and McCarty say that the stories they would hear in these interviews were just heart-breaking. “There are rapes, murders, children being forced to watch people being stoned to death, all these things,” he says. “But even though they share these traumatic experiences, they leave the sessions with smiles and hugs and it just blows my mind—and that is the power of art. Also, it is the power of someone who knows and understands how to manage these emotions responsibly.”

McCarty says that a regular art-based interview session lasts over three hours. “The first part is just to get the children to relax and feel safe and help them open up,” he says. “This part will have a lot of physical activities, play activities and some art activities. We then move on to the actual interview part. It is designed in such a way that the children are asked to draw a story from their life that they want to share with the world. It need not be necessarily about war or conflict. Sometimes we get to hear stories of a cat that comes by the window at night or a child's sister taking a toy truck or whatever. But nine out of ten times, we get to hear war-related stories. In the last part of the session, Myra brings the children out of that [traumatic] space.”

Saad points out that this last session is crucial. “We did not want to meet the children, open up their wounds and leave,” she says. “We use art therapy approaches to empower them. The children get the chance to share their stories and be listened to in a safe environment.”

McCarty recalled the story of an Iraqi girl who came to a session in 2017. “She came home after spending a day at her grandmother’s place to discover that her father, mother and sister had been executed by Islamic State,” he says. “She even drew very specifically where each one had been shot. She drew herself crying at the sight of them. Myra then brought her out from that traumatic mind space, and even after sharing the drawing, she had a beautiful smile on her face. When asked what she wanted to become in the future, she said she wanted to be Myra. She left the session with other children, but then she returned to give her a hug.”

In 2019, McCarty founded NGO War Toys to “give future generations a better chance at peace and to envision a cultural paradigm shift in how we think about war as a society and how we encourage our children to play.”

Currently, the NGO is lending support to First Aid of the Soul, a grassroots organisation founded by Ukrainian art therapist Nathalie Robelot. It is also building its programme to help children in conflict zones of Ukraine. “The challenge has been finding actual Ukrainian-speaking art therapists; there just are not a lot,” says McCarty. Untrained and unequipped therapists can cause more harm than good, he says. “This is a big problem... there is a lack of legitimacy and accreditation in many places,” he says, “and too many folks just call themselves art therapists.”

scientific-studies-are-unravelling-the-link-between-art-and-healing

Sun Jun 26 18:03:31 IST 2022

When Aleena Ali and Tanushree Sangma first came to her with an “art cart”, five-year-old Tushara Gaur showed little interest. But when Ali started taking out items from the cart and asked the little one to choose, Tushara's face lit up with a beautiful smile; she pointed to a water-colour brush.

Tushara has blood cancer, and has spent most of the last nine months in various hospitals. She is currently an in-patient at the Fortis Memorial Research Institute (FMRI), Gurugram.

Both Ali and Sangma, expressive art therapists, encouraged her parents to join Tushara. The mother sat next to her on the hospital bed, and the duo started drawing. The mood in the room changed. Sangma tied balloons to the IV stand and Ali introduced a DIY clay extruder. Her effort to shoot clay from it made Tushara laugh. By the time they left, the therapists had built a rapport—and thereby begun a therapeutic relationship—with Tushara. Through the session, the child had not spoken a word. But she did communicate through non-verbal ways and “art”.

There is no general agreed-upon definition of the term “art”. Russian writer Leo Tolstoy called it an indirect means of communication between people. Some others say it represents the expression of thoughts, emotions, intuitions and desires. “When you are creating art, you are freeing yourself,” says Bose Krishnamachari, painter, curator and co-founder of the Kochi Biennale Foundation. “As an artist, I would say that when I am working, I am in my space. Being yourself is one of the most beautiful things.”

For thousands of years, humans have used idols, charms, sacred symbols, chants and music in healing rituals. Professional “art therapy”, though, was only established in the mid-20th century. A unique therapeutic approach, it incorporated elements of movement, music, visual art, theatre, poetry and psychodrama in healing. It started as a way to treat veterans of the world wars who were suffering from post-traumatic stress disorder and to help children and teens with special needs.

What is art therapy?

Art therapy is essentially an umbrella term we use to define different art modalities or expressive capacities,” says Aditi Kaul, who leads the expressive arts therapy programme at FMRI. “The idea is not that a person [undergoing therapy] should be good at a particular art form. He should just be able to use an art form as a language to express himself, process things and work through that to get to a place where he would feel the healing.”

Dr Christianne Strang, an art therapist with over 30 years of experience and a professor at the University of Alabama at Birmingham, says anybody can use art for healing, but when it comes to art therapy, there are specific treatment goals. “And those goals are arrived at with the client—art therapy is not something we do ‘to a client’, but something we do ‘with a client' in a therapeutic relationship,” she says. “And then the art materials in the process become part of that relationship.”

Dr Samir Parikh, director of the department of mental health and behavioural sciences, Fortis Healthcare, says that art therapy is used to treat a range of mental health issues such as depression, substance abuse, anxiety and schizophrenia. However, the scope of art therapy goes beyond mental health care, he says. “We provide art therapy sessions to all children and teens admitted at Fortis,” he says. “We also provide art-based sessions to patients who are suffering from conditions like cancer, trauma, dementia and stroke.”

He adds that art therapy should be used to supplement conventional methods of treatment. “For example, in a stroke case, the patient might be receiving physiotherapy and counselling,” he says. “Along with that, he may receive an art therapy session to improve his motor skills, cognitive functioning and movement. We also use art therapy sessions and workshops to facilitate self-discovery and growth.”

The emergence of modern art therapy

British artist Adrian Hill is said to have coined the term “art therapy” in 1941. While undergoing treatment for tuberculosis at King Edward VII sanatorium in Sussex, Hill had started drawing to pass the time. He found that the process improved his mood and aided in his recovery. The war painter then started exploring how he could help other patients with this discovery. “Hill published his theories in his book Art Versus Illness, which later was mandated for nursing staff in hospital units,” says Kaul. Hill also found that merely looking at art had some positive effect, and asked hospitals to hang artwork on their walls. “The hospitals were sad, white, dull places,” says Kaul. “Thanks to Hill, colour exists in hospitals across the world now.”

Rishi Taneja, 35, found the healing power of art just like Hill did—accidentally. “I have always been an artist; in fact, I went to an art school called Camberwell College of Arts in London,” says the Delhi-based fashion photographer. “But the first time I experienced the true value of art is when I dealt with grief.”

Taneja lost his mother in 2010 and his father the next year. “Though I have been on a lot of medication for anxiety and depression ever since, and attended many therapy sessions, painting has helped the most in terms of dealing with grief,” he says.

American psychoanalyst Margaret Naumburg played a crucial role in developing art as a therapeutic modality backed by scientific study. Between 1941 and 1947, she worked at the New York State Psychiatric Institute and published a series of case studies in which she used art for diagnosis and therapy. “Naumburg brought together psychotherapeutic concepts and visual art and a little bit of movement [therapy] and gave it that art therapy stamp,” says Kaul. A major question art therapists faced was how to decide the appropriate media for their patients, and under what circumstances an art-based activity using that media could be therapeutic. The answer came in 1978, in the form of a theoretical framework called expressive therapies continuum (ETC). Developed by art therapists Sandra Kagin and Vija Lusebrink, ETC helped therapists identify which part of the brain and which brain functions were affected, and to choose a therapy plan accordingly. “ETC looks at the neuroscientific aspects of art therapy,” says Kaul. “For a long time, it was believed that the brain remained plastic only during childhood and adolescence. But research shows that the brain has neuroplasticity (the ability of neural networks in the brain to change) throughout lifetime. So, the brain decides what pathways and connections need strengthening, and which ones do not. New studies show that people engage both sides of the brain when they use creativity and engage in an art-based activity. So, creativity can be used to develop new neural pathways and to replace or bypass problematic neural pathways in the brain.”

Girija Kaimal, assistant dean for Special Research Initiatives, Drexel University in Pennsylvania, says the human brain is like a prediction machine. “Every day, we are taking in information from our senses, our memories, and from things we learn, know and have experienced to prepare for an uncertain future,” she says. “Art helps us try out different scenarios for the future in creative ways. In the process, different neurobiological systems come into play.”

Being creative, she says, is a natural state as the brain is constantly figuring out solutions to problems that inevitably come to us every day. “Now the tricky thing is if we overestimate negative outcomes, we get things like anxiety,” she says. “If we see no hope for the future, we get depressed. If our imagination sort of loses touch with reality, we go to psychosis or schizophrenia. So, neurobiologically, when we create, we activate reward pathways in our brain. Reward pathways are dopaminergic pathways. Dopamine is released when we create something that makes us feel good. It is activated when we use our motor systems as well as our imagination system.”

Kaimal adds that when we communicate our inner state in an art therapy session with a compassionate and non-judgmental therapist, our stress level goes down. “You will see levels of [stress hormone] cortisol going down,” she says. “Our studies have shown that.”

Also, as per a study published in the Journal of the American Medical Association in 2020, art therapy is found to have produced better outcomes in treating PTSD among military servicemen compared with popular verbal psychotherapies.

Common therapy techniques

Kaul and Sangma performed a mock “mirroring game”—a common exercise in dance/movement therapy and drama therapy—for THE WEEK team at Sukoon Health, a psychiatric hospital governed by FMRI. It started with Sangma raising her right hand and moving her body to her right. Kaul imitated her. Then Sangma moved to the left. Kaul did, too. Soon, their moves became like a dance. This was followed by a discussion about their emotional states while doing the “dance”.

The mirroring game, say experts, enhances communication, empathy and understanding of others’ emotional intentions. Kaul recalled the case of a couple. “They were struggling with their relationship,” she says. “Their core issue was that they could not consummate their marriage for three years. There was a lack of communication. We initially tried conventional talk therapies. But none of them worked. So we decided to employ dance movement therapy techniques like mirroring, in addition to some visual art techniques. This was highly effective in making them understand each other’s patterns and mental states. Communication also became smoother. Their sessions lasted for around nine months and now they have a baby girl.”

Arts therapists use various techniques like the mirror game to create treatment protocols best suited for their patients. To deal with emotional issues like anger, therapists may ask clients to make a “stress painting” by choosing the colours representing their stress, design a postcard that the patient will never send, make sock puppets to act out stressful situations or put together a journal. Likewise, for patients in distress, one of the most commonly used techniques is to ask the patients to draw a “safe space” and place the people and things that make them comfortable in it.

Art therapy techniques are also used together with cognitive behavioural therapy to treat victims of sexual abuse. Expressive arts therapist Avantika Malhautra spoke of a case where she worked with a young woman who had body image issues and low self-esteem. “Because of a history of sexual abuse, she had not accessed certain parts of her body, as she felt numbness in those parts,” says Malhautra. “Over four months, and after several sessions of working together, art, movement and drama techniques became a container for her to express her true feelings, which she had not felt safe to express earlier. This created a shift in her and brought back a sense of agency and belonging to her body.”

Art-based therapies for different outcomes

Therapists say that play therapies are effective with children. A trained therapist can use this time to gain insight into a child’s problems and can help him deal with unresolved trauma. “I have worked with children who experienced a lot of guilt, anger and confusion on the separation of their parents,” says Malhautra. “I found that creating a story using angry or sad masks, or projecting their home life through drawing or clay using metaphors of animals was helpful in self-expression and asking for what they need.”

There is growing awareness that art-based therapies can supplement cancer care, too. “Cancer is a physical illness, of course. But it is one of those unique illnesses that really forces people to reevaluate life,” says Kaimal. “So when people engage in artistic practices, they often talk about life and getting a second chance and doing things they might not have thought of.”

A 2017 study conducted by Kaimal’s team, studying 22 cancer patients, found that participants felt more positive and more confident after they had 45-minute sessions of colouring or free art-making with an art therapist.

Art can also help athletes, says mental conditioning and peak performance coach Dr Swaroop Savanur. “Athletes are generally goal-oriented people,” he says. “Therefore, their mind is always focused on goals and performance. And, that can trigger a lot of thoughts that can affect their focus. So, the principle for helping them is to be calmer, to be in the present. Art can help them get away from these thoughts and be mindful.”

Savanur, who has been the mental conditioning coach for the IPL team Punjab Kings, says he uses art mainly in team-building sessions. “Last year, when our players were in quarantine, I had used art to make them more creative. I built some kind of team-building activity around it, which they enjoyed.”

Art can also help players from different countries and backgrounds communicate. “These team-building activities are created to ensure that they can understand each other not just as a player, but as a person,” says Savanur.

Sudha Meiyappan, who founded the NGO Parivartan For Parkinson’s Foundation, says that art-based therapies are effective in improving the quality of life of those affected with PD. “Parkinson’s disease is caused by reduction in dopamine secretion,” she says. “The disease affects the motor skills from the beginning itself. As the disease progresses, it will become worse. The reduction in dopamine would affect the patient’s mental wellbeing also. It is known to cause depression in over 50 per cent of population affected with PD. It is proven that art practices are helpful not only in dealing with the reduction in dopamine levels, but also in improving the cognitive and motor skills of patients. That’s why we are conducting art-based sessions.”

S. Sudandra Babu, 62, a PD patient, agrees. “The disease started in 2018 with tremors in the hands,” he says. “After that, I started feeling anxiety and dizziness. I started attending the art sessions in Parivartan last year. I felt comfortable while drawing in the sessions. In my childhood, I used to draw pictures. After around 50 years I am back into drawing.” Babu says that it is not easy for him to hold the drawing materials tight, or to draw continuously. But drawing for three to four hours is part of his daily routine now. “Every day, it is a daunting task to start drawing. I have to wait till the tremor stops,” says Babu. “But still, I will do it. Because I feel good when I draw.”

Smita Vinchurkar, 46, a Mumbai-based photographer, says that she used to think of art-based therapeutic intervention as a sham. But her own experience, specifically after she started taking pottery lessons, made her a believer. “I lost my job during the pandemic,” she says. “And, I was affected with a lot of negative feelings. That is when I decided to attend a one-day trial session at a pottery studio. I found that the tactile experience of pottery was meditative. It also connected me to my childhood. It gave me a new perspective in my life.” She now wants art education to be made compulsory in schools as it will help children be better equipped to cope with stressful situations in future. “Art,” she says, “is for everyone; art heals.”

Some names changed on request and for privacy

sight-support

Sun May 29 12:04:01 IST 2022

A BENGALURU-BASED software solutions company and an NGO are offering what is perhaps the best solution so far for the visually challenged in India. Smart Health Global, led by IIT Kanpur alumnus Ramu Muthangi, and Vision Aid have come out with Smart Vision Glasses (SVGs) customised for Indian users.

These spectacles are loaded with Artificial Intelligence aids—camera and sensors, and software to translate these visual inputs into audio ones to help the user ‘see’ what is immediately around her.

The easy-to-use spectacles have a small panel, the size of a small pen drive on the side, with Braille-coded options. The user simply needs to press for the option she wishes to use. For instance, if she opts for ‘things around me’, the spectacles scan all around and give inputs on what the immediate surrounding is like. It thus makes for a good mobility assistant, as it alerts the user about obstacles ahead.

The glasses also have a face recognition feature, by which over a hundred faces can be stored in its memory. So the next time a known face is before the user, she will get the voice input about it.

The reading assistant feature helps the user ‘read’. She has to bring the page near the camera, which takes a picture and then reads out the text, even instructing the user to go to the next page at the end of the text.

Another interesting feature is the helpline; pressing this option connects the user to the Smart Health Global team. Thus, it gives the user more autonomy; she does not have to depend on another person for simple troubleshooting. The spectacles can be connected to a smartphone via an app.

Sonia Srivastava, assistant manager, low vision services at Dr Shroff's Charity Eye Hospital, said that the device, which was being released through the manufacturer's partner hospitals, would be a game-changer for the visually challenged in India. “We have never had such a device,” she said. “The smart glasses from the west are exorbitantly expensive, costing several lakhs of rupees (SVGs cost a little above Rs25,000). Also, their voiceovers were in foreign accents, which were difficult for Indian users to understand. These SVGs are adapted for Indian languages, whether it is reading text in various Indian scripts, or whether it is in the ‘speaking out’, which is again in an Indian accent.”

mind-the-rehab-gap

Fri May 27 16:15:34 IST 2022

VISUALLY IMPAIRED persons, whether from birth or those who lost sight later in life, can lead extremely productive and independent lives, given the right training and assimilation into the mainstream, says Dr Umang Mathur, executive director, Dr Shroff's Charity Eye Hospital.

While there are traditional ways of using audio and tactile inputs to help “see”, artificial intelligence solutions today provide game-changing opportunities. However, access to these aids and training are important.

Mathur recalled the case of a patient who had congenital cataract. His cataracts were removed and he was discharged from hospital. However, since the child had lost out on early schooling, no school was ready to enrol him at a later stage. He ended up as a manual labourer. “We came to know about this when he reported to hospital with some other problem,” said Mathur. The rehabilitation team then intervened, and helped the boy out. He later appeared for his board exams through the National Institute of Open Schooling.

On the other hand, Mathur cites the case of a visually challenged man who is running a successful travel agency, not just making a good living for himself but also providing employment to around a dozen people.

Smartphones are an accessible aid to almost everyone now. The TalkBack feature on Android (VoiceOver on iPhone) allows users to navigate their way through the phone's various features and apps with voice assistance. Smartphones, when connected to other devices like Smart Vision Glasses (see page 32), can bring about a very high level of independence to the user. Audiobooks and tactile models can complement Braille in providing a rich educational experience to children.

Today, technology is not that expensive. The missing link is the dearth of trainers and rehabilitation experts who will identify a person's need and also help that person get assimilated into the mainstream. Most eye experts, for instance, are concentrated in the bigger metro cities. Patients often visit these centres only when their condition has deteriorated rather substantially, and then, there is not much that can be done by way of mitigation.

Dr Sima Das, head of oculoplasty and oncology services at the hospital, says she sees so many cases of eye tumours among children at a stage when the disease has already metastasised, and it is a matter of saving the life, not the organ. In the west, she says, this condition is detected so early that in most cases it is treated before the vision gets impaired.

life-is-beautiful

Sun May 29 12:05:02 IST 2022

As Khatera Hashmi smoothed the creases from her new salwar kameez—a confection in red and gold that she got for Eid—and arranged her daughter on her lap for a family portrait, a small frown appeared on her smooth brow. “I had told you, hadn't I? That you should wear a good dress, too, we will be having our pictures taken,” she said. “But you don't listen to me.”

Her husband, Mohammad Nabi, shrugged helplessly. “You are looking pretty, little Bahar has a new dress on, why bother about how I am looking?” replied Nabi.

Khatera, however, was not pacified. She knows he is wearing a faded tee and shabby shorts—his home clothes. She has smelt and felt them. Nabi looked at us sheepishly, as his wife gave him that wait-till-we-get-home expression.

Khatera is very image-conscious. How she appears to the world is very important for her, even though she can no longer see the world.

India came to know of Khatera's existence when she came to Delhi in 2020, a living testimony of the Taliban's brutality. The young woman in her thirties, who only months earlier had finished her training and joined the police force in Ghazni town, had immediately come on the Taliban's radar. At that time, the Taliban was a guerrilla force, the US troops were still in Afghanistan and Ashraf Ghani was heading the country.

They threatened her against continuing her job—it was not right for a woman to be working. The threats were dire enough for her superiors to suggest she take a transfer to Kabul. Nabi, who owned a cloth shop in the market, headed to Kabul, looking for an accommodation to rent. “It was the afternoon of June 6, 2020. I was walking back from my shift at the police station, which was very close to my house,” recounted Khatera in perfect Hindi. “Suddenly, three men emerged from a narrow lane—two were on a motorcycle, one was on foot. They began hitting me and the scarves they wore around their faces loosened, even as I fell to the ground. I had seen their faces.” That was the last thing Khatera ever saw. She blacked out in pain. The men, ostensibly afraid they would be identified, simply gouged out her eyes with some sharp weapon—no one knows what it was.

“I was reading the namaz when I got a call from Khatera's friend, saying she was attacked,” recalled Nabi, his Hindi heavily accented and liberally sprinkled with Pashto. “I thought it was a joke and went back to reading the namaz. But then I began feeling uneasy and I called her again. And my world crashed around me.”

Khatera was shunted from hospitals in Ghazni to Kabul. She had injuries all over, but her face was the most battered. “I didn't think she would survive,” said Nabi. She did, however. And as she recovered, her family dreaded telling her the truth. Around 12 days later, when her injuries were healing, she realised that as the bandage slipped from her eyes, her lids seemed stuck together—they weren't opening. “I realised I couldn't see,” she recalled that moment in a surprisingly composed voice. “Vo din mere liye bahut sakth tha [it was a very difficult day for me].”

What Khatera was not to know was that even her eyelids were mutilated. It has taken several painstaking surgeries by the doctors at Dr Shroff’s Charity Eye Hospital in Delhi's Daryaganj to bring back the beauty of her face. Only, the light they haven't been able to restore.

However, they have taught her to “see” her world in so many different ways. “With the right rehabilitation, a blind person can be extremely productive,” explained Umang Mathur, executive director of the hospital. Mathur has a soft spot for Afghanistan—he did the end part of his schooling (class nine and ten) there. That was in the 1980s, when Afghanistan, under Russian occupation, was a different world—a place where women sported haircuts and where cabarets were happening.

Khatera resumed her story. “I was plunged into the world of darkness, but there was more trouble awaiting,” she said. Her story was being told and retold in Kabul, and this brought her on the Taliban's radar again. Amid all the bleakness, however, there was one more development. Doctors discovered she was pregnant. “I wanted to kill myself so many times since the attack,” she said. “But when I came to know I was going to have a child, I got fresh hope.”

Hope has been a shifty companion for Khatera. It has kept her going during the worst times, but it has also crashed the world around her as many times. Hope then took the form of an American charity worker—Stephanie K. Hanson—who came to know of her. Through charitable foundations Orbis and Seva, which work for eyesight restoration and rehabilitation of the blind, she reached out to Dr Shroff's hospital in India. “With the Taliban focusing on my case, even the government recommended we should go to India for treatment and safety,” said Khatera. Thus, Khatera came to India in December 2020, in the thick of lockdowns, leaving her home, perhaps, forever.

India, for many Afghans, is a land of dreams. It is the solution to their problems. It brims over with possibilities. Khatera came over, clinging on to a hope that the miracle of vision would happen in India. “As of today, we can only do corneal transplants to restore vision. In her case, both the eyes had been mutilated,” explained Dr Sima Das, head of the hospital's oculoplasty and ocular oncology services. In the months before she was shifted to Delhi, the local doctors had anyway removed all the eye tissue. Mathur said that the practice these days was to retain as much of the original tissue, because, sometimes, despite the worst trauma, miracles happened. It could only be a perception of light and dark, but for a patient, even that small perception is a huge empowerment. “The Israeli doctors always recommend saving original tissue,” he explained, but added that ground realities are often very different, and doctors have to take on-the-spot decisions. In Khatera's case, the mutilation was so bad that she even required reconstructive surgery on the eye sockets.

The months that followed were a series of surgeries and recoveries as doctors rebuilt her face. She even had hearing loss in one ear because of the injuries, which has been improved vastly.

Khatera recalled the day when her last hope shattered. The technicians were taking her measurements for artificial eyes. “I knew then that this is my reality.” Khatera's new eyes may be sightless, but they are beautiful works of art, painstakingly hand-painted to replicate what her actual eyes must once have been like. She wears them proudly, they give her confidence in her looks. She “sees” things in different ways, however.

Sonia Srivastava, assistant manager, low vision services, was the messiah who brought a new light to Khatera's life, guiding her through a rehabilitation process that helps her use hands, ears and nose as her new visual aids. The process is slow, often frustrating, but the results are game-changers. “I used to be so scared to be alone,” recalled Khatera. “I would not allow my husband to leave the room. I could not even turn on an electric switch. I used to be scared I would get an electric shock.”

Nabi has loyally stood by her side, taking on every setback with a brave front, and rejoicing in every small progress. Blessed with a daughter last year, he has two demanding women to take care of. “He is also learning a lot,” said Khatera with a warm smile. “Initially, when he would go to the kitchen, he would pester me about how much salt to put, how long to stir a dish and so many other annoying questions. You should taste his cooking now. He makes such delicious chicken.” Nabi smiled shyly at the compliment.

Theirs was a love match. Romance blooms even in the most forbidden environments. Khatera's father was a tailor; she did some sewing, too. She would often go to the market to purchase new material. Soon, the shopkeeper was as much an attraction as the latest bolts of textile, mostly imported from India. “I remember giving him my phone number, so that he could alert me when something new arrived,” said Khatera. Numbers exchanged, the romance bloomed further, till the couple got married four years ago. He has an earlier wife, and several children, all of whom have been left behind as they made their journey to India. “We always thought we would go back, or the family would come to meet,” said Nabi. But first there was Covid-19, then the Taliban takeover in Afghanistan. A reunion seems impossible in the foreseeable future, at least.

The last two years have been trying on their relationship, but Khatera said it helped her “see” people through. “My husband did not give up hope,” she said. “My mother-in-law would nag him constantly to leave me—I was useless and blind. He did not give up on me.” Nabi tugged at his hair. “See all these whites, the last two years have brought them on. The day Khatera was attacked was the worst day of my life,” he said, an involuntary shiver passing over him. He has battled her suicidal thoughts, her struggles with re-learning every little thing, the endless visits to the hospital—it can be intimidating for the well-trained caregiver, let alone someone who has no experience and is himself battling loss at various fronts. But the day Khatera demanded he get a “big speaker” for her to listen to music, he knew that the darkest hour was past. “Such a big speaker she wants,” he said, spreading his hands theatrically. “She always wants loud music.”

Khatera was born when her family lived as refugees in Pakistan, so she speaks and understands Hindi. Even on return to Ghazni, she spoke in Hindi and Urdu with her siblings, watched Bollywood films and listened to Hindi songs.

She is back to humming songs as she manages the few chores she has learnt at home. I ask her to sing. She is shy. But we know there is music bubbling within her. Her husband urges her on with some suggestions. She has a choice of songs from Hindi and Pashto now, and she deliberates, before settling on a Hindi number. It is about loyalty and fidelity. As she began singing, her toddler daughter left the sliced cake she was eating, and listened to her mother in rapt attention. Nabi wore an indulgent look.

There is a new spring in Khatera's life. Recently, she had started attending classes at the National Association for the Blind (NAB) centre in the city, thanks to Srivastava's interventions. “I was so hesitant initially,” she confessed. “I thought, ‘Others will see me spill food, or drop something, it will be so embarrassing’. Then I realised they, too, were sightless. They are also learning, like me.” Khatera has learnt to cook again. She can boil milk and make tea and instant noodles. “I spread my hands over the pot like this,” she says, gesturing with her hands over an imaginary pot. “The temperature changes tell me how far the boiling is progressing.” However, Nabi is lord of the kitchen. “Someone has to take care of Bahar, too,” they said.

Khatera is happy she can do that part. “I can massage, bathe and change her clothes, too,” she said. “I like going with my husband to the market to buy new clothes for her.”

NAB is opening up a whole new world of possibilities for her. Her impoverished living in Ghazni did not give her access to a smartphone, let alone a computer. At the centre here, she is learning to use a computer through voice commands. Srivastava is also teaching her to operate a smartphone with the help of voice commands. Once she is proficient, she will be equipped with a special set of spectacles. These spectacles will have cameras fitted on to them, and will be synced with the phone. They will be a navigation aid, conveying what is before her through voice messages. But the most interesting feature of these spectacles is that they will be able to do a face scan of the person before her. If that person's details match with the entries on her phone, the spectacles will recognise the person, and tell her who is approaching.

Khatera always wanted to see India. “When I got my police job, I had told myself I will save for a trip to India,” she said. “I didn’t know I would be coming here like this. But I am glad I am in India. This is a wonderful place, the people are so good, and they work different miracles here.”

The path ahead is not easy. She still has terrible headaches. There are more surgeries left to repair the damage around the eye orbits and she has only just started down the road of rehabilitation. At some point, Nabi has to think of getting some employment, too. They have got refugee cards, so at least they can stay here without worry. But as Bahar grows up, there will be newer cares to deal with.

Khatera, though, has regained her zest for living, and for taking up challenges, with her love at her side. “Zindagi abhi achchi lagne lagi hai (life is looking good again),” she said.

recurrent-fusion-genes-found-in-60-to-70-per-cent-of-prostate-cancers

Sun May 01 10:50:09 IST 2022

Dr Arul Chinnaiyan was awarded this year’s Sjoberg Prize in cancer research for establishing that the fusion gene is responsible for more than half the prostate cancer cases in the world. In an exclusive interview, Chinnaiyan talks about fusion gene and how it is going to help in treating prostate cancer. Excerpts:

What is fusion gene?

A fusion gene occurs when two genes, which normally reside in different parts of the genome, come together and get fused. The fusion of genes can initiate the development of cancers in which they are found.

Why is it important in prostate cancer?

It is important in prostate cancer because recurrent fusion genes are found in upwards of 60 to 70 per cent of prostate cancers. The most common gene fusion we discovered is called TMPRSS2:ERG, which is found in about 50 per cent of patients. These prostate cancer gene fusions are typically regulated by male hormones and cause increased levels of cancer driver genes. When recurrent gene fusions are discovered for a particular cancer type they are considered the molecular cause of the cancer. In addition, to serving as a therapeutic target in prostate cancer, these gene fusions are exquisitely specific for prostate cancer and thus can be used as diagnostic biomarkers.

How is it going to help with diagnosis and treatment?

The TMPRSS2: ERG gene fusion that we identified is an exquisitely specific biomarker of prostate cancer that can be detected in prostate needle biopsies and non-invasively in the urine of men with prostate cancer. In terms of treatment, the gene fusions in prostate cancer are under the control of male hormones, and blocking male hormones is already an established treatment for prostate cancer. Investigations are underway to target the gene fusion product directly or indirectly using a variety of approaches.

Is it relevant in other cancers?

Before the discovery of recurrent gene fusions in prostate cancer, it was thought that gene fusions and translocations were major drivers of liquid cancers and rare soft tissue tumours, but we had found these gene fusions in high prevalence in a common solid tumour, that being prostate cancer. After our discovery, a number of recurrent gene fusions were identified in subsets of other common solid tumours including lung cancer, breast cancer, and melanoma, among others. Perhaps, the most famous being the EML4-ALK gene fusion in lung cancer which can be directly targeted with drugs.

What is your current focus of research?

My research, in general, is focused on precision oncology with a heavy focus around prostate cancer. Since I was awarded this prize for the discovery of recurrent gene fusions in prostate cancer, I plan to use the funds from this award to fuel our efforts in therapeutically targeting the products of these gene fusions—which are oncogenic transcription factors. We will develop direct and indirect approaches to target oncogenic transcription factor in cancer.

Dr Arul Chinnaiyan is director of the Michigan Centre for Translational Pathology and SP Hicks endowed professor of pathology and urology at the University of Michigan

a-cancer-no-one-really-talks-about

Sun May 01 10:53:12 IST 2022

John Smith is a healthy 56-year-old with no family history of cancer. Other than the occasional social drinking, he followed a healthy lifestyle, with regular exercise and a balanced diet. He never smoked.

Lately, he started getting up at night to urinate. He did not make much of it. But when he started noticing blood in the urine, he consulted a urologist. Following the prostate examination, which showed a hard nodule, the urologist ordered a blood prostate specific antigen test (PSA) test. The blood test revealed that his PSA level was very high. After an ultrasound, the urologist recommended a prostate biopsy.

A week later, Smith and his wife were sitting in the urologist’s office listening to alien terms like Gleason score, radical prostatectomy, radiation and hormonal blockade. The only word Smith heard and registered was prostate cancer.

Prostate cancer is a disease in which malignant cells develop in the prostate gland. The prostate is a small walnut-shaped gland that is a part of the male reproductive system. It produces some of the fluid that is a part of the semen that transports sperm during ejaculation. It is located just below the bladder and in front of the rectum. “Testosterone, the male hormone, acts like a food for prostate cancer,” explains Dr Jatin Bhatia, consultant-radiation oncology, Jupiter Hospital, Pune. “Testosterone gets converted into various chemical forms, and the form that acts as a feeder for prostate cancer increases. Meanwhile, the other forms decrease.”

Prostate cancer is the second most common cancer in men worldwide and the fourth most common cancer overall, after breast, lung and colorectal cancers. According to the World Health Organization, there were about 1.41 million newly diagnosed cases of prostate cancer in 2020.

Prostate cancer is less prevalent in Asia. It is more common in North America, northwestern Europe, Australia and on the Caribbean islands. While more intensive prostate cancer screening in many of the developed countries could probably be the reason, lifestyle factors such as diet and exercise could also play a role. For instance, while Asian Americans have a lower risk of prostate cancer compared to white Americans, their risk is greater compared to men of similar ethnic backgrounds living in Asia.

In India, one in every 10,000 men is diagnosed with prostate cancer, says Dr Ramakrishna Vangara, consultant-radiation oncologist, Manipal Hospitals, Vijayawada. According to data from national cancer registries, prostate is the second leading site of cancer among men in cities like Delhi, Kolkata and Pune and the third leading site of cancer in cities like Bengaluru and Mumbai. “With the increase in life expectancy, the incidence of prostate cancer has gone up phenomenally,” says Dr P.P. Singh, senior consultant and head of department of urology, PSRI Hospital, New Delhi.

Despite the increase in numbers, prostate cancer remains one of the least talked about cancers, at least in India. “Hence, there remains a great deal of misinformation about the disease and sometimes the symptoms are attributed to something else,” says Dr Ramesh Kinha, vice president and head of lab operations at Medall Healthcare in Chennai.

The exact aetiology of prostate cancer is unclear. Prostate cancer is caused when the DNA of a normal prostate cell starts to change. These gene changes can cause the cells to grow out of control and form tumours. Certain well-established risk factors for prostate cancer include advancing age, family history and certain genetic mutations.

“As we know, any cancer is from chronic inflammation. Inflammation could be caused by prostatitis. It could be even related to viral infections,” says Dr B.S. Ajaikumar, chairman and CEO, HCG Group of Hospitals, Bengaluru. “Over a period of time, these can cause prostate cancer. It can also be ethnic-based. It is also an ageing process.”

All men are at risk for prostate cancer, and the risk increases with age. About one in eight men will be diagnosed with prostate cancer during their lifetime in the US. Prostate cancer is rare in men younger than 40. About 60 per cent of cases are diagnosed in men 65 or older. The average age of men at the time of diagnosis is 66.

Prostate cancer can run in families. Having a first-degree relative (father, brother) with prostate cancer more than doubles a man’s risk of developing this cancer. The risk is also higher if several family members have had a diagnosis. That is one reason why Salil N.S., 52, a senior law officer at South Western Railway headquarters in Hubli, was not shocked when he was diagnosed. “This was not something alarming to me as I had other members in the family who had it, like my paternal uncle who has been living with prostate cancer for more than 15 years without any treatment,” he says. “The only difference was that he was diagnosed after the age of 65, whereas my diagnosis was before I turned 51.”

Several inherited gene mutations can also raise prostate cancer risk. Inherited mutations of the BRCA1 or BRCA2 genes, which are linked to an increased risk of breast and ovarian cancers, can also increase prostate cancer risk in men. Salil had a genetic profiling done, which indicated some mutations that could be the cause for his disease. Men with Lynch syndrome also have an increased risk for prostate cancer. Other contributing factors may include obesity, diet, hormones, smoking and alcohol consumption.

In general, prostate cancer grows very slowly and often does not cause any symptoms in its early stages. Symptoms of prostate cancer include problems with urination like difficulty starting urination, slow or interrupted urinary stream, frequent urination, especially at night, difficulty emptying the bladder, painful or burning urination, blood in the urine or semen and painful ejaculation. Symptoms of a more advanced prostate cancer that has spread outside of the prostate gland may include pain in the hips, back, pelvis, chest or other areas if the cancer has spread to bones, swelling or weakness or numbness in the legs or feet, weight loss, fatigue and loss of bladder or bowel control.

Prostate cancer often does not have any warning signs or symptoms. That is why screening and early detection are important. Cancer that is detected early, when it is still confined to the prostate gland, has the best chance for successful treatment.

The two most commonly used tests to screen for prostate cancer are PSA test and the digital rectal exam (DRE). Prostate-specific antigen test is a blood test that measures PSA levels in a person’s blood. The possibility for a cancer diagnosis increases as the PSA level goes up. Prostate cancer is commonly detected by elevated levels of prostate-specific antigen (PSA >4 ng/mL), says Dr Kirti Chadha, chief scientific officer and consultant onco-pathologist at Metropolis Healthcare, Mumbai. Men with a PSA level between 4 and 10 have about a 25 per cent chance of having prostate cancer. The chances of having prostate cancer are over 50 per cent if the PSA level is more than 10. But PSA levels alone cannot determine a cancer diagnosis. The PSA level could also be elevated due to other conditions that affect the prostate.

While screening can identify cancer early, the benefits may not always outweigh the risks. Both the PSA and DRE tests can yield false negative (a person may actually have cancer) and false positive test results (a person may not actually have cancer) and can often lead to unnecessary tests, like a biopsy of the prostate, as well as cause anxiety and confusion.

Screening can also lead to over-diagnosis and treatment. Since prostate cancer grows very slowly, some men with prostate cancer would never have had symptoms from their cancer nor would they die from it. Treatment of cancer that would never have caused a problem can lead to unnecessary complications from treatment like surgery and radiation, such as urinary incontinence, bowel problems and erectile dysfunction that can ruin a person’s quality of life, with no added benefit.

“The US National Cancer Institute does not have screening recommendations for prostate cancer. Prostate cancer screening should be done only after discussions with one’s doctors of the uncertainties, risks and potential benefits of screening,” says Dr James L. Gulley, chief of genitourinary malignancies branch and director of medical oncology service, National Cancer Institute, US.

If the PSA and DRE tests are abnormal, a prostate biopsy is often recommended. Prostate cancer is assigned a grade if the biopsy results show cancerous cells. The higher the grade the greater risk that the cancer is more likely to be aggressive and spread quickly.

A Gleason score is the most common scale used to determine the grade of prostate cancer cells. The score ranges from 2 to 10. A Gleason score of 6 or less indicates a low-grade prostate cancer; a score of 7 indicates an intermediate-grade cancer; and scores from 8 to 10 indicate high-grade cancer.

Once prostate cancer is diagnosed, other tests such as bone scan, ultrasound, CT scan, MRI or PET scans are done to determine if the cancer cells have spread to other parts of the body. This will help determine the stage of the cancer. Stage I means the cancer is confined to the prostate, while stage IV indicates the cancer may have spread to other areas of the body.

Treatment options depend on several factors, including the patient’s age, Gleason score, stage of the cancer, how aggressive the cancer is, whether it is confined to the prostate or has spread to other parts of the body, overall health of the person, as well as the potential benefits vs side effects of the treatment.

“We experience an unprecedented era of rapid new developments in the field of prostate cancer therapeutics, including radiopharmaceuticals/'theranostics' (using one radioactive drug to diagnose and another to deliver therapy), targeted therapies for selected patients (eg, PARP inhibitors) and novel immunotherapy strategies,” says Dr Petros Grivas, professor and clinical director, genitourinary cancers program, Fred Hutchinson Cancer Research Center, Seattle. “The advent of novel imaging, for eg Prostate Specific Membrane Antigen (PSMA) Imaging or fluciclovine/axumin PET, represents another great opportunity for more accurate prostate cancer staging. However, the clinical utility, impact and practical implications on decision making need to be better defined in clinical trials.”

Early stage, low-grade prostate cancer, especially in older men, may need minimal or even no treatment. Doctors may recommend active surveillance or watchful waiting. Active surveillance involves closely monitoring the prostate cancer by performing PSA tests and prostate biopsies regularly and opting for treatment if the cancer grows or causes symptoms. In watchful waiting, fewer tests are done. The patient is treated only if he has any symptoms. This is usually recommended for older patients with low-grade tumour.

But prostate cancer in younger patients and cancer that is aggressive need multidisciplinary treatments. A radical prostatectomy involves removing the prostate gland as well as some surrounding tissue and a few lymph nodes, an option for cancer that is confined to the prostate. Jitendra Yadav, 58, from Mumbai did a PSA test as part of his executive health check-up. Thanks to that, his cancer was detected early. “Also, the cancer was localised to prostate with no spread elsewhere in the body,” recalls Dr Shrikanth Atluri, uro-oncologist and robotic surgeon, Sir H.N. Reliance Foundation Hospital, Mumbai. “He was treated with robotic radical prostatectomy where the entire prostate was removed by surgery.” Yadav has been disease free for seven years.

Novel surgical technologies such as laparoscopic and robotic surgeries to remove the prostate gland can potentially offer faster recovery and less complications. According to Dr Ashwin Tamhankar, consultant, uro-oncology and robotic surgery, Apollo Hospitals Navi Mumbai, surgeons prefer robotic surgery because it gives the advantage of better precision, control, 3D vision, negligible blood loss, quick recovery and early discharge.

Another treatment option is radiation therapy, which uses high energy rays to kill the cancer. There are various types of radiation therapy approaches like external beam radiation therapy, wherein a patient lies on a table, and a machine moves around the body, directing radiation at the cancer cells; brachytherapy (internal radiation therapy) involving small radioactive seeds or pellets that are surgically placed into or next to the tumour to destroy the cancer cells; and proton beam radiation therapy—a type of high-energy, external radiation therapy that uses streams of protons to kill tumour cells. There have been rapid advances in radiation therapy, like the CyberKnife device, which results in less damage to surrounding tissues when compared to conventional radiotherapy.

Apart from chemotherapy and immunotherapy, there are other therapies like cryotherapy, which uses extremely cold temperature to freeze and kill cancer cells, and hormone therapy that uses medications or surgery to reduce the levels of male hormones, called androgens, that fuel the growth of cancer cells in the body. There is also targeted drug therapy that uses drugs to target specific proteins that control the growth of the cancer cells. Bisphosphonate therapy has drugs, such as clodronate or zoledronate, that reduce bone disease when cancer has spread to the bones and reduce the risk of fractures. High-intensity focused ultrasound uses high-energy ultrasonic beams to kill cancer cells. And, photodynamic therapy uses a drug and a certain type of laser light to kill cancer cells.

Since Salil’s cancer had spread to the lymph nodes, he had a combination of therapies at HCG Bengaluru. His PSA levels were brought under control with hormone therapy. “Initially, surgery was being planned,” he says. “However, the decision was left to an interdisciplinary medical board. As the disease had responded well to hormonal treatment, the medical board advised to go for radiotherapy through CyberKnife.” His treatment lasted six weeks. “There is no significant weakness or other problems related to this radiation therapy,” says Salil. “It is a painless outpatient process. I was at the hospital alone during the treatment; no bystanders were needed.” The PSMA PET scan was repeated after the treatment. The results were heartening. However, Salil is still on hormonal therapy. “The treatment, particularly the hormonal therapy, has adverse effects on sexual life. Apart from that, life goes on as normal,” says Salil.

Novel treatments and technologies are changing the landscape of prostate cancer management. PARP inhibitors, such as Olaparib and rucaparib, are found to be highly effective in patients with genetic mutations such as BRCA1 and 2.

“PSMA PET scans are one of the most exciting recent developments in prostate cancer,” says Dr Rahul Tendulkar, clinical director and residency program director for the department of radiation oncology, Cleveland Clinic, US. “By detecting early recurrences while they are small in size and number, we can offer patients treatment with stereotactic body radiation therapy and hopefully eradicate their visible disease.”

Ramlal Sahu, 85, from Nagpur was suffering from frequent urination, difficulty in passing urine, back pain and pain in his left leg because of which he was unable to walk. He was admitted in a critical condition to HCG NCHRI Cancer Centre, Nagpur, and was diagnosed with prostate cancer. Sahu had multiple comorbidities such as diabetes and hypertension and he also suffered from cardiac-related issues, which prevented him from being a candidate for chemotherapy.

“We started him on targeted therapy and tested for genetic mutations and he tested positive,” says Dr Nikhil Pande, medical oncologist, HCG NCHRI Cancer Centre, Nagpur. “He is now on second-line treatment with Olaparib, a form of targeted therapy and is doing well.”

Chadha is thankful for scientific advances. “The gland’s location on the neck of the urethra by the bladder means that whole-gland treatments like radical prostatectomy or radiation therapy often leave men with incontinence and erectile dysfunction,” she says. “However, developments in MRI are enabling more targeted treatments to the prostate without damaging surrounding structures.”

Researchers are now testing the use of artificial intelligence to recognise suspicious areas in a prostate MRI that should be biopsied, says Chadha. “AI tools also help pathologists who aren’t prostate cancer experts to accurately assess prostate cancer grade,” she says.

Can prostate cancer be prevented? There is no absolute way to prevent prostate cancer. Risk factors such as age, genetics and family history cannot be modified. While several drugs and supplements are being studied, there isn’t enough evidence to make conclusive recommendations on prostate cancer prevention.

Maintaining a healthy weight, staying physically active, eating a balanced diet and avoiding smoking are all factors that could improve your overall health and lower your risk of prostate cancer.

Some studies have suggested that high consumption of dairy products may increase the risk of prostate cancer. Limiting dairy products and calcium intake could be beneficial.

A couple of studies have suggested that men with a higher frequency of ejaculation may have a lower risk.

Since prostate cancer tends to grow slowly, most men diagnosed with prostate cancer will live a long, normal life and do not die from it. The 10-year survival rate is about 98 per cent. Many of the elderly men detected with prostate cancer die with prostate cancer rather than because of it, says Bhatia.

There are hundreds of clinical trials in different phases related to prostate cancer treatment that are in progress around the world. These trials will help the medical community better understand how to diagnose, treat and prevent prostate cancer and improve patient outcomes.

“While significant strides have been made in treating localised and advanced prostate cancer, understanding the disparities in prostate cancer outcomes by age, stage, race and ethnicity is crucial to decreasing global incidence of prostate cancer, especially in developing countries” says Dr Shilpa Gupta, director of genitourinary oncology program, Cleveland Clinic.

Some names have been changed.

philanthropy-could-transform-iisc-bangalore-into-a-health-care-hub

Wed Mar 23 12:19:43 IST 2022

IISC BANGALORE HAS entered into an MoU with Ajit Isaac, founder and chairman, Quess Corp, and his wife Sarah Isaac, to establish a centre for public health. The couple has committed Rs105 crore towards the centre, which will be called the Isaac Centre for Public Health and will be a part of the upcoming IISc Medical School. The centre is expected to be operational by 2024 and is aimed at encouraging aspirants to pursue careers in clinical research to develop new treatments and health care solutions.

The centre will be located in the medical school’s academic and research block and span one floor spread over 27,000sqft. It is expected to create postgraduate education and research programmes in public health and will offer dual-degree programmes such as master of public health plus doctorate (MPH-PhD), which would be five-six years. The centre will also host high-end biomedical research computing infrastructure to host the data, and develop and test big data analysis methods tailored for public health.

IISc director Govindan Rangarajan said there was an acute need for India to have a centre for clinical and academic research in public health to be able to make quicker and more impactful strides in realising the goal of quality health care for all. “The proposed centre will be an interface between all the departments of the IISc Medical School, and also other science and engineering departments of IISc in the context of public health research,” he said. “In particular, the centre will create a niche for health data science and analytics through collaboration with the existing computer science and data science departments at IISc, putting it on par with international counterparts like the Johns Hopkins Bloomberg School of Public Health.”

Isaac said the humanitarian crisis created by the pandemic will take several years to recover from and has exposed the lacuna in public health systems. “This needs to be addressed systematically and consistently,” he said. “A strong nation is not only built on education and employment, but good, sound public health. And the onus of building a healthy future cannot lie on the government alone.”

md-phd-programme-will-open-up-new-avenues-for-students

Wed Mar 23 12:16:57 IST 2022

DR NATASHA DESHPANDE, based in Belagavi, Karnataka, recently completed her MBBS from the Jawaharlal Nehru Medical College in the city and is now planning to pursue MD in the US. She feels that the proposed MD-PhD five-year course that will be offered by the upcoming IISc School of Medicine and Bagchi-Parthasarathy Hospital, Bengaluru, will be a big help to medical students.

“To get both MD and PhD, it generally takes seven years after MBBS,” she said. “Also, in the proposed MD-PhD programme, the student has to submit just one thesis. Now, it is one during MD and one during PhD.” She added that an MD and PhD together will provide more options to choose from for the thesis and will also make more topics available for research.

At present, she said, students who are keen on research have to look for opportunities abroad and this may contribute to brain drain. “The initiative taken by these philanthropists at IISc Bangalore will bring everything under one roof and will make a great difference in the lives of the students as well as the future of India,” she added. “Post MD-PhD, there would be multiple career paths that would open up for a student. They can pursue advanced research, they can become an academician, or they can become a practitioner. This programme will open up new possibilities to students who were interested in research but could not afford to go abroad.” Such a programme will increase the research mindset of the new generation of students who pass out of medical colleges, said Deshpande.

wealth-for-health

Wed Mar 23 12:14:14 IST 2022

Decades ago, Subroto Bagchi, the co-founder of IT major Mindtree, and his wife Susmita, an acclaimed writer, used to travel to the US quite a lot for various projects. The couple spend considerable time there. They observed a sense of obligation towards the community among people there and were deeply influenced. The couple was awed by the ability of many moneyed people to write a cheque and walk away from it.

“There is a misconception that in the west it is all about me, myself and I,” said Bagchi. “Take the example of the funding of Stanford, Harvard or Yale. People exhaust their life’s savings and simply go away, often anonymously. That spirit is what funds long-term research. That is one of the things that creates academic freedom and flexibility to pursue nebulous, but potentially life-altering ideas. Though many of them do not materialise, if one or two do, they turn out to be inventions that save humanity.”

With this in mind, the Bagchis and Mindtree co-founder N.S. Parthasarathy and his wife Radha joined hands with the Indian Institute of Science Bangalore and donated Rs425 crore to help build a not-for-profit, 800-bed multispeciality hospital on the IISc campus in Bengaluru. It is the single largest private donation ever received by IISc and the hospital, which will be set up as part of a postgraduate medical college (the IISc Medical School), will be named the Bagchi-Parthasarathy Hospital.

“This will be the first large-scale effort to integrate engineering, science and medicine in the lap of an institution that has the culture of research,” said Bagchi. The medical college being located alongside the IISc's science and engineering departments is expected to lead to greater interactions and synergy between the disciplines. Bagchi added that breakthroughs in health care require engineering, science and medicine to coalesce. “The intersecting area becomes the space for path-breaking innovation,” he said.

He said that both he and his wife had great admiration for what IISc does, how it does it and its ability to stay the course with regards to the cause for which it was created. However, they had not imagined that they would get the opportunity to collaborate with the Institute of Eminence. Then, they heard, from the Parthasarathys, about IISc director Govindan Rangarajan's vision of creating an IISc medical college.

The Parthasarathys had met Prof Rangarajan on December 30, 2021 and were interested in the project, but they were nervous about engaging with an institution of the stature of IISc and about the scale of the idea. They decided to discuss the idea with the Bagchis. “Susmita is the cautious one among the two of us, but within minutes, her eyes lit up,” said Bagchi. “To Partha’s surprise and joy, we told him on the spot that he had made a great choice and that we also wanted to come on board. The very next day (December 31, 2021), we met Dr Rangarajan. We saw in him a leader driven by purpose.”

Rangarajan said that the Parthsarathys had seemed keen on being involved in the project even during the first meeting. This combined with the fact that they returned with the Bagchis the next day was a good sign. But, Rangarajan was still unsure whether the meeting would be fruitful. After all, he had made hundreds of presentations to large institutions to no avail. But after the meeting that lasted an hour, the prospective donors told him that they were not thinking in terms of “whether or if”, but how and when. “During our discussions, we discovered that our visions were closely aligned and it was a real joy for me to interact with them,” said Rangarajan. They also met Prof Navakanta Bhat, dean, division of interdisciplinary sciences, IISc.

On January 5, the Bagchis and the Parthasarathys said they would jointly donate Rs425 crore for the construction of the hospital. “I was accompanied by Prof Bhat during this meeting and both of us literally jumped in joy,” said Rangarajan. Bagchi said that they were blown away by how much homework the two professors had done. “It did not feel like we were dealing with an academic institution because of the clarity, the collaborative spirit and the unbelievable response time of IISc,” he said.

The Bagchi-Parthasarathy Hospital will provide advanced facilities for diagnostics, treatment and research. Facilities for genome sequencing, robotic surgery and organ transplant will be available. A comprehensive bio-repository will be created in the hospital for retrospective and prospective analysis of patient samples such as blood, tissue culture and lung lavage.

Prof Bhat said that the hospital is envisioned to be a “digital hospital”, implementing technologies and solutions to enhance operational efficiency. Moreover, for training, simulation platforms will be made available. “For instance, the operation theatres will have live feed to the seminar halls so that the postgraduate students and researchers can have real-time exposure to complex surgeries,” he said. The latest augmented reality and virtual reality tools will be available to enhance the educational experience.” He added that a telemedicine suite with haptic interfaces will be provisioned for remote follow-up and long-term care delivery to patients in peri-urban (immediately adjacent to urban) and rural settings. “Given the evolving research on mind-body connection on healing, the hospital will have an integrative medicine wing with yoga and meditation facilities,” he said.

Rangarajan said the larger vision of the project was to establish the best medical school in India and one of the best in the world. He added that this can be achieved by conducting high-impact clinical research, which leverages the IISc's existing strengths in science and engineering. Another important aspect is to train a new cadre of “physician-scientists” who will be highly knowledgeable both in basic research and clinical studies. “In the MD-PhD programme, MBBS graduates will spend time in the hospital performing clinical studies and in the science or engineering labs performing basic research,” said Rangarajan. “Combining both these aspects, they will submit a single thesis at the end of five-six years and will be awarded both an MD and PhD. These students will spend around six months in the best medical schools abroad, further enhancing their training.” Students of other courses on the IISc campus will also benefit by interacting with the medical faculty and by being able to do projects oriented towards clinical research.

The architect for the project, Archi Medes Consultants, was finalised after a rigorous selection process involving more than a dozen firms specialising in hospital design. They came up with the final design of three interconnected blocks for the hospital, a utility block and an academic block. The architecture, the modularity of design and the equipment are all geared towards world-class standards. IISc plans to hire faculty for the medical school from 2024.

Rangarajan took over as director, IISc, in August 2020, months into the pandemic. Therefore, he felt that the immediate priority for IISc should be establishing a postgraduate medical school so that it can help the country in preparing for and mitigating future health care crises. “Given my own interdisciplinary background, I had seen first hand the advantages of collaborating with other disciplines,” he said. “Hence, I wanted the integration with science and engineering. When this idea was proposed to our senate and governing council in early 2021, they fully supported it.”

For the Bagchis, philanthropy is not new as they have funded a cancer hospital and a palliative care unit to be set up in Bhubaneswar by Sri Shankara Cancer Foundation and Karunashraya, respectively. The two projects together will have an outlay of 0340 crore. The government of Odisha has given 20 acres of prime land to each institution, free of cost. While researching for these two projects, they had looked at many global institutions for ideas and had come across something inspirational.

“We all know about the Sloan Kettering Hospital in the US,” said Bagchi. “It is at the forefront of cancer treatment and research. What many do not know is that this started relatively small, as Marshall Hospital. And then came Alfred Sloan and Charles Kettering, auto-industry executives who came to Marshall Hospital, wrote fat cheques, and walked away. How did they do that? It couldn’t have been a decision based on kneading excel sheets. It was a work of heart.” Humankind, he added, needed such works of the heart more than ever before. “We saw IISc presenting us a platform to help build an institution that may turn out to be something like a Sloan Kettering or a Mayo Clinic or the Harvard Medical School,” said Bagchi.

He said that he and his wife have shared vision, values and objectives all their lives. “When Mindtree happened, all the founders had emptied their life’s savings into the initial equity, even before the venture capital was raised,” said Bagchi. “When it became successful and over the years it became apparent that we will be rewarded with more money than we needed, Susmita and I called our daughters Neha and Niti. We asked ourselves what our approach to wealth should be. We needed our children to be decision makers as well. Susmita and I suggested that a substantive part of the wealth must go into serving larger causes, helping build institutions. Our daughters listened. But they had a caveat: 'Keep what you need for your own future and please spend the rest of the money for causes you find dear to you. But please, do that in your own lifetime'.”

For Parthasarathy, Covid-19 provided a moment of clarity. His mother was hospitalised during the peak second wave. Because of the rush and scarcity of beds, it had taken hours of anguish before she finally got into a hospital. “We could not go in,” he said. “We didn’t know what would happen next. We were standing on the road for hours and then we realised we were hungry. This was during the complete lockdown and there were no restaurants open. We called a friend, who was kind enough to bring us some food. We sat on the road outside the hospital and gratefully ate the food. Sometimes, you can have all the money you want but it cannot even buy you food. Eating on the road that day, in that moment of distress when a loved one was inside the hospital, we were seized by the urgency of the situation.”

He and Radha strongly believe that philanthropy must take its rightful place in supporting and enhancing India's outstanding public institutions. “People with money are not necessarily the best people to build and run world-class institutions,” he said. “And we should be comfortable donating and leaving it to the institution. Radha and I come from ordinary backgrounds and studied in ordinary schools,” he added. “We believe that destiny has placed resources in our hand for a purpose and we have to fulfil that purpose. We have the full support of our daughter and son-in-law for using these resources for the common good. Our intention was to fund education and health care and the IISc project presented us with this opportunity.”

The philanthropists hope that one day IISc will give humankind the next great thing, like insulin or a Covid-19 vaccine. But equally important, they hope it will make breakthroughs in medicine and health care delivery that will lead to equity and access. “The professors at IISc keep using a phrase we like,” said Bagchi. “They talk about medicine 'for the next 6 billion people'. At the core of this gigantic vision is the need to breed the scientist-physician and this can happen through the proposed focus on the MD-PhD programme.” He added that the dream to make IISc a breeding ground for med-tech was equally significant. “Med-tech entrepreneurs will flourish,” he said. “These youth will come from many disciplines and co-create medicine, devices and systems for delivery. The silicon valley of medicine will come up here.”

helping-the-heroes

Sun Feb 27 11:54:53 IST 2022

Kinjal Gathani has a master's in applied positive psychology and coaching psychology. She is certified by the International Coaching Federation and the European Mentoring and Coaching Council. She finds her role at Aster holistic, with equal focus on supporting well-being and resolving grievances.

“Employee well-being is a complex, multidimensional concept, being defined by the International Labour Organization as an aggregation of an employee’s physical environment, social environment, health and safety,” she said.

Gathani says her job involves multiple interventions, from individual well-being coaching and counselling to group activities. “Well-being is not a one size fits all panacea and hence we cater to varying and diverse employee needs,” she said. “While partnering with employees in their journey from grievances to well-being, we endeavour to first understand where the need lies and eventually tailor unique and relevant solutions.”

She added that there was a lot to be done with regards to the well-being of health care workers in India. “Indian health care organisations need to explore ways to support well-being programmes aimed at raising the levels of happiness and contentment at the workplace, invariably resulting in higher productivity,” she said.

caring-through-coding

Tue Feb 22 16:12:26 IST 2022

Anubhav Anand, like most Indians, experienced the chaos of the health care system during the pandemic. “From finding the right hospital near you to dealing with paperwork, insurance claims, bills.... Doing all this while your dear one is on IV with scary looking machines beeping is a test,” he said.

Through his job, he tries to make the experience better. “I was attracted by the novelty of challenges which the company was taking on, like consistent clinical outcomes, pricing transparency and patient accessibility,” he said. “Most of the time, people just Google the nearest hospital, without knowing if it is equipped to handle the problem. Our team at Ayu Health is empowering our medical officers with an in-house tool, with which they can filter information, categorise it and recommend the nearest and the best-suited medical help.”

Anand, who works on automating large parts of the process, joined as a trainee in September 2021 and was offered a full-time role two months later. “The human body does not show concise error codes like software, so codifying it remains a challenge that we like working on,” he said. “However, our team is more than equipped to navigate this. I feel that India has moved up a rung in the pyramid of needs and is looking for seamless experiences everywhere.”