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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.”

trust-builders

Thu Feb 24 18:41:29 IST 2022

It was “trust issues”that made three young entrepreneurs—Himesh Joshi, Arjit Gupta, and Karan Gupta—think about building a new tech-powered health care model for India. And by the time they unveiled their model via their startup Ayu Health, the pandemic hit the country and made it apparent how unreliable the country’s existing health care system is for a large section of the population.

“During our research, we found that there were only a few trusted hospital brands in the country,”says Joshi, CEO, Ayu Health. “But these top brands are often out of reach for most patients. For an average person, differentiating between hospitals is often a challenge. Earlier, we used to have a system of the family doctor. People had trust in him, and he would suggest which hospital they should go to. We do not have this system anymore, and patients do not know which hospital is good and which is not.”

This made the tech-trio think about offering clear information to the public on the number of available beds, doctors, surgeons and medicines in each of the hospitals near their location. They observed that by providing adequate information, people will have more trust in the hospital facilities—and also would help them take timely decisions.

Thus, the tech-trio decided to build a branded private hospital chain that an average Indian can trust and afford for its transparency and quality. “We thought this trust must be built on three broad pillars—consistently good clinical outcomes, transparent and affordable pricing, and quality experience,”says Joshi. “Our mission is to make quality health care accessible to everyone, everywhere.”

Ayu Health started operations in 2019 making a Chandigarh hospital its partner. The hospital started using the technology platform built by the startup for patient management. Ayu Health digitised the entire consultation, medicine prescription and payments procedure to offer a better experience to customers. It also helped its partner hospital to create a more “asset-light”network, where Ayu Health manages end-to-end administrative operations and the medical faculty concentrate on clinical outcomes. This partnership model soon attracted many other small and medium-sized hospitals. Now, this unique model has 40-plus hospitals in Bengaluru and 20-plus hospitals in Chandigarh as part of its chain.

Joshi says that there are plenty of multispeciality and super-speciality hospitals in India with good health care outcomes, but are not doing very well on the business front. “We found that these hospitals are lagging in terms of managing the procurement of drugs and consumables, insurance and continuously evaluating technology to improve patient experience,” he says. “So, we co-branded these hospitals, gave an operating system to run the hospital, [and deployed] technology to improve patient conversion and patient experience. We also helped them procure drugs and other equipment at better prices, and have better insurance partnerships.”

Before diving into the health care sector, Joshi, Arjit and Karan were into e-commerce. Their refurbished goods marketplace, Zefo, was acquired by online classifieds platform Quikr in 2019 for 0200 crore in an all-stock deal. Karan comes from a family of doctors. And that connection was crucial in the trio’s shift to health tech.

“Karan’s father had set up this 100-bed super speciality hospital—something into which he had invested a lot of money and effort,”says Joshi. “He had been running it for the last three to four years, but the hospital was not doing that well [on the business side]. [After Zefo was acquired], Karan’s plan was to go and help his father [with the business]. And, that is where his—and later our—research about the problems faced by unbranded hospitals started.”

The trio launched the startup after five months of research. Joshi says that the pandemic has been a hindrance to their growth. “We would have probably grown more in the last two years [if there was no pandemic],”says Joshi. “But one silver lining of the whole pandemic was that it accelerated the adoption of technology in the Indian health sector. And, we were always available for our partners [to provide solutions demanded by the Covid phase]. For instance, we launched a telemedicine application for our partners within 24 hours after the government released the new telemedicine guidelines.”

He is hopeful that the digitisation push will make the patients more informed and demanding about the quality of medical care they receive. And he is confident about Ayu Health’s unique health care model.

In September 2021, the company raised $6.3 million in funding for expanding its hospital network and building new technology solutions for hospital management. The startup expects to grow its business ten-fold in the financial year 2022. It also aims at 5,000 additional beds in six cities by December.

solution-squad

Mon Feb 28 14:06:12 IST 2022

Low doctor-to-patient ratio, acute shortage of trained professionals, ill-equipped ICUs, inadequate medical infrastructure—India faced the Covid-19 pandemic with all these vulnerabilities. But this once-in-a-lifetime global crisis became the fuel that ignited a makeover of the Indian health sector. Dramatic changes happened in patient care, patient management processes and allied services in the last 24 months.

“One major structural change could be seen in intensive care units in hospitals,”says Dr Swami Subramaniam, a clinical pharmacologist and neuroscientist who has been in leadership roles in various health care companies. “Hospitals are investing big time in expanding not just intensive care unit capacity, but also to train more intensivists. The normal beds to ICU beds ratio changed; hospitals added more ICU beds in this phase.”

Medical experts point out that during the first and second waves of the pandemic, the system focused primarily on Covid-care. A vast majority of hospitals had stopped or postponed elective surgeries. But postponing emergency surgeries and procedures was not an option. The situation had forced many leading hospitals to turn to robot-assisted surgery to clear the backlog.

Robotic surgery allowed social distancing with fewer people around the patient and the robot. It also allows fast recovery of patients. “All of a sudden, the number of open surgeries came down, and robotic surgeries went up,”says Prof Dr Somashekhar S.P., chairman and HoD, surgical oncology, Manipal Comprehensive Cancer Centre. Somashekhar, one of the pioneers of robotic surgery in India, has done over 2,800 robotic surgeries in his career. “We did 536 robotic surgeries during the pandemic, which was much more than in any of the last 10 years,”he says.

Though robotic surgery was introduced many years earlier in India, its usage has been limited. However, fear of the virus infection from prolonged hospital stay—a requirement for most open surgeries—made patients demand robotic surgery. And this demand created a new crop of robotic surgeons in India who perform minimally invasive surgery using advanced surgical systems like Da Vinci.

Created by Intuitive, a global technology leader in minimally invasive care, Da Vinci is the most used surgical robotic system in the world. The country currently has more than 75 Da Vinci systems installed across major public and private hospitals. “There are over 500 trained robotic surgeons in India now,” says Mandeep Singh Kumar, vice president and general manager, Intuitive India. Intuitive has three centres in India to train robotic surgeons. Last year, the company started collaborating with top government medical colleges to familiarise future surgeons with robotic-assisted surgery. In January, the company launched India’s first remote surgical case observation technology, Intuitive Telepresence, to enable those undergoing training to learn from expert robotic surgeons remotely.

It was not just global players like Intuitive, desi health-techs also came up with innovative solutions—and even shortcuts—to deal with India’s systemic shortcomings. Take, for instance, the case of qXR of Qure.ai, an AI-based chest X-ray analysing solution repurposed to screen the Covid-infected population in slums and remote villages. “Our application helps to interpret X-rays faster and better,” says Prashant Warrier, founder and CEO, Qure.ai. Built with deep learning, qXR can detect abnormalities in lungs, bones, diaphragm and heart with great precision, in less than one minute.

During the first and second waves of Covid-19, RT-PCR or antigen testing facilities were not available in many parts of the country. Even if they were available, two to three days were required to get the test result. “But X-ray centres are there in almost every corner,” says Warrier. “The qXR, on analysing X-rays, would tell whether there is lung damage or lung infection because of Covid. Lung abnormalities were a major indicator of Covid infection.” Warrier, however, notes that X-rays were not always accurate in detecting Covid. “You might miss [Covid-positive] cases in which there is no lung damage visible,”he says. The Brihanmumbai Municipal Corporation adopted this technology for rapid screening of Covid-positive cases in Mumbai slums. The qXR utilises the scalability and agility offered by cloud computing technology to deliver its services.

It was during the pandemic that a large section of Indian hospitals moved their IT operations from legacy systems to the cloud. This led to wide-scale implementation of Software as a Service (SaaS)-based health care solutions across India. And, the result was a heightened demand for techies in the health care sector.

“The sudden acceptance of the digital ecosystem to meet the patient demands during the pandemic has resulted in the need for health care providers to become digitally savvier,”says Himesh Joshi, who co-founded Ayu Health which had become a technology partner for over 60 private hospitals during the pandemic. According to data from employment website Monster.com, job postings under the tag of Indian health care, biotechnology and life sciences, and the pharmaceuticals industry witnessed a 9 per cent year-on-year growth in January 2021. Software developers and artificial intelligence and machine learning professionals are in high demand capturing almost 40 per cent of the health care jobs listed. Job roles related to telemedicine, digital marketing and clinical research also have seen a boom in the sector compared to pre-pandemic levels. “There have been several acquisitions and huge investments lately in the health-tech domain, which has led to a rise in hiring demand in the sector,”said Chandra Sekhar Garisa, CEO, Monster.com. “The sector is expected to grow at a 39 per cent compounded annual growth rate over FY2020-FY2023.”

Adarsh Natarajan, CEO and founder of health startup AIndra Systems, points out that technology can become a force multiplier to bring down the inequities in the Indian health care segment. AIndra’s flagship work is in pathology—one of the fastest advancing health care segments. Their AI platform Astra is built to detect critical illnesses such as cancer. Natarajan points out that the platform can be extended to build diagnostic tools for several critical illnesses. Both Qure.ai and AIndra are winners of the prestigious India-Sweden Healthcare Innovation Centre Challenge.

“The increased digitisation and AI in the health care sector will result in an uptick in tech-influenced jobs taking away from jobs having repetitive tasks,”says Runam Mehta, CEO, HealthCube, a point-of-care technology-enabled diagnostics services provider. “Candidates who have a good understanding of domain-specific business process management, along with knowledge in AI and robotics, will be highly coveted by any health care solutions company.”

Covid-19 has dramatically changed the way hospitals deliver outpatient care. In the initial phase, several patients—including many who needed emergency care—avoided hospital visits because they did not want to leave their homes and risk exposure. This situation prompted health care providers to start telemedicine and home care services. Kalappa K.B., country head HR at Aster DM Healthcare, says demand for telehealth services had seen a slow decline as Covid-19 lockdowns were lifted. “Because of the wider acceptance for home health care segment during the pandemic, we increased the hiring of nurses and paramedics to suit the job roles in this segment,”he says. “Another job that became hot during this phase was that of a mental health consultant. The work-from-home conditions and the varied clinical issues that arose because of Covid infection created a mental imbalance in many people. Hence the job of mental health consultants became more crucial.”

Ranjan B. Pandey, the chief human resource officer at Fortis Healthcare, says home care professionals were in high demand especially in the elderly care segment. The renewed focus on the ageing population and preventive care led to increased demand for skilled professionals like phlebotomists (technicians who collect blood from patients and prepare samples for testing), lab assistants and diagnosticians.

“Home collection of samples for lab testing also gained prominence,”says Pandey. Medical recuperation professionals who offer post-Covid treatment and nutritionists are some of the other job profiles that gained prominence in the post-pandemic phase.

Covid has provided India with a unique opportunity to burnish its credentials as a global leader in vaccine manufacturing and drug development. Subramaniam, who is currently serving as the CEO of Ignite Life Science Foundation—a Bengaluru-based non-profit scientific research institute, says that the government is now considering policy directions to increase funding for research in domains like epidemic diseases. “So, we expect that in the next few years, we will see more centres dedicated to investigating pandemics and developing a response to pandemics,”he says.

In July 2021, the Ignite Life Science Foundation announced its first grant award for “pandemic preparedness”research to a team led by Raghavan Varadarajan, a professor at the Indian Institute of Science, Bengaluru. The team will use the three-year grant to develop platform technologies for mRNA vaccine development.

Varadarajan works on stabilising and engineering proteins. “In the late 1990s, the three-dimensional structure of one of the HIV [human immunodeficiency virus] proteins came out,”he says. “And, we thought it would be interesting to use what we knew to work on this sort of problem.”And that is how he got initiated into vaccine research.

During the pandemic, Varadarajan’s team, in collaboration with a Bengaluru-based startup Mynvax, had worked on developing an indigenous thermo-tolerant vaccine—that can be stored at room temperature. They saw promising results in animal trials with their vaccine formulations. Their initial findings were published in the American Society for Biochemistry and Molecular Biology’s journal, Journal of Biological Chemistry, in 2020. However, progress to clinical development has been delayed because of funding constraints.

Varadarajan says that as part of their Ignite-funded project, his team will first create a normal mRNA vaccine. “As we get more experience, we will try to make it thermotolerant,”he says. All the currently available mRNA vaccines need to be stored at very cold temperatures.

“It has become clear that mRNA is an efficacious technology,”says Varadarajan. “Before the pandemic, mRNA was fairly untested. But there are still many things to be resolved in this segment. mRNA vaccines are not cheap, and they have storage issues. Also, a lot of intellectual property [rights] are held by a few companies. This is a major challenge in this field.”Varadarajan says that substantial and timely government funding to both academia and industry is required to catalyse research in this frontier area and to better prepare the country for future pandemics.

The pandemic was a time when the country witnessed an explosive rise in biomedical waste—masks, personal protective gears, syringes, vaccine vials. And, lakhs of biomedical waste managers worked 24x7 to keep the country’s health infrastructure clean and safe. The service they offer to society often went unrecognised in the past. But the pandemic made people recognise the heroic work they do behind the scenes, says Masood Mallick, joint managing director of Ramky Enviro Engineers Limited, a leading biomedical waste management firm. “The way our people stepped up, it was like a soldier who waits his entire life for that one war,”he says. “Most of the country’s Covid waste was treated by our frontline staff. We took waste from everywhere—not just from hospitals, but also from commercial institutions converted into isolation centres, and airports. We even handled waste from competitors who could not cope. We serve about 45,000 hospitals in India. We have facilities for collection, transport, treatment and disposal of waste in 23 cities.”

Mallick says Ramky used its industrial waste managing facilities to augment and supplement its industrial waste management capacity. The company gave special monetary support to its biomedical waste handlers. It also started a comprehensive employee assistance programme to protect the families of frontliners in case of a Covid casualty. “Just 48 hours after the start of the national lockdown, we had 100 per cent attendance. And that happened just because our people felt that it is their duty, it is their time to serve," says Mallick. “It is a matter of pride that our biomedical waste management team did not have a single fatality to date. After the pandemic began, we started a campaign, #OutThereForYou, to tell our communities that we are out there for them. And, there were some instances where our waste collection teams had received flower showers or were garlanded with money. Hard times bring the best out of people; the pandemic was a life-changing experience for our team.”

india-pig-heart-doctor

Tue Jan 25 13:16:14 IST 2022

The first recorded xenotransplant in India was performed in January 1997. Dr Dhani Ram Baruah, a cardiothoracic surgeon from Assam, transplanted a pig's heart and lungs into Purna Saikia, a 32-year-old farmer with ventricular septal defect (hole in the heart). The transplant that took 15 hours was carried out at Baruah’s clinic in Sonapur, a small town on the outskirts of Guwahati. Baruah, a fellow of the Royal College of Surgeons, London, performed the procedure along with Dr Jonathan Ho Kei-Shing, a surgeon from Hong Kong.

Saikia had failed to respond to conventional surgery and the xenotransplant was performed as a last resort, with consent from the patient and his family. The transplant went awry. A week after the surgery, Saikia died of multiple infections and hyperacute rejection. “Certain genes and proteins in the tissues of an animal are recognised by the human immune system and this leads to hyperacute rejection,”said Dr Sonal Asthana, lead consultant, hepato-pancreato-biliary and liver transplant surgery, Aster CMI Hospital, Bengaluru. “It is the reason for death in most cases of xenotransplantation. Initial strategies to deal with hyperacute rejection involved profoundly suppressing the host immune system, which left the patient vulnerable to infections.”

Both Baruah and Kei-Shing were arrested under the Transplantation of Human Organs Act, 1994, and imprisoned for 40 days. During the trial, Baruah argued that the act did not cover transplantation of organs taken from other species. Baruah, who is now 72, had a stroke in 2016 that left him unable to speak. People close to him said he was not greatly moved by the Maryland surgeon’s feat.

If Baruah were to perform a xenotransplant now, the chances of survival of the patient would be much higher thanks to the evolution of technology. “Gene editing technologies have made it possible to remove the genes that cause interspecies hyperacute rejection, and insert genes that improve human compatibility,”said Asthana. “Also, CRISPR-Cas9 genome editing [employed to modify the pig heart used in Maryland] has made it easier to create animal organs that are less likely to be attacked by human immune systems.”

As a transplant surgeon, Asthana looks at Baruah’s work objectively. He feels it is important for us to draw lessons from the opprobrium that Baruah had to endure. “To go beyond, India has to create the research and innovation mindset that allows physicians to test new ideas that can save untold numbers of lives,”he said. “Without innovation, there is no progress.”

a-shot-in-the-dark

Tue Jan 25 13:10:59 IST 2022

He was getting closer to death, which made him say “yes”to a risky medical experiment. David Bennett Sr, the first human to receive a heart transplant from a genetically-modified pig, thus became part of the history of medical science.

The 57-year-old Maryland man had uncontrolled cardiac arrhythmia, a condition that would result in irregular heartbeat. Doctors did not consider him a good candidate for human heart transplantation because his medical records said he had often missed appointments and not filled prescriptions. Statistics show that those patients who are not good at following doctors’orders usually do not survive long with a donor heart. Bennett was also too sick to qualify for a human donor heart. The condition that he had exhausted all treatment options and would die anytime without a new heart, made him gamble on the experimental transplantation.

Dr Bartley P. Griffith, professor of surgery at the University of Maryland School of Medicine (UMSOM), led the January 7 transplantation procedure on Bennett. Dr Muhammad M. Mohiuddin, professor of surgery and director of the cardiac xenotransplantation programme at UMSOM, was another crucial member of the team. Dr Griffith and Dr Mohiuddin reportedly spent three decades fine-tuning the surgical techniques for this transplant they conducted on Bennett.

Dr Griffith told Bennett about the experimental method in December. “We can’t give you a human heart; you don’t qualify. But maybe we can use one from an animal, a pig,”he told his patient, according to The New York Times. To that Bennett replied: “Well, will I oink?”

When Bennett discussed his decision to be a pig heart recipient with his son David Bennett Jr, he became perplexed. The younger Bennett initially thought his father was experiencing delirium because of his continuous hospital stay. But he soon realised that his father was telling the truth.

Pigs offer a great choice for organ procurements. Transplanting pig heart valves into humans is common now. In 2013, Bennett Sr had undergone surgery to implant a pig valve in his heart. The valve was implanted after removing the pig cells, so he didn’t have to take immunosuppressants then.

Gene editing and cloning are the two technologies used to yield genetically-modified pig organs that won’t be rejected by the human body. In September 2021, doctors at New York University Langone Health had transplanted kidneys from genetically-modified pigs into a legally dead person with no perceptible brain function. The procedure was done with the permission of the patient’s relative. He was sustained on the ventilator, and his body did not reject the organ for more than two days.

The January 7 procedure by the University of Maryland Medical Centre (UMMC) doctors on Bennett Sr marks the first time a pig organ is being transplanted into a human being who still holds a chance to recover and survive.

His condition was so bad before the transplant; he was on extracorporeal membrane oxygenation (ECMO) machine—which pumps and oxygenates a patient's blood outside the body—for almost two months. Because he had irregular heartbeats, he was not fit to have a mechanical heart pump, too.

The United States Food and Drug Administration rejected the initial applications for human trials of pig heart transplantation by the UMMC. The FDA asked them to transplant hearts into 10 baboons before trying it on humans. However, on New Year’s Eve, the agency authorised the surgery under its “compassionate use”provision.

The surgery encountered some major challenges. The anatomy was a little problematic and the doctors had to do plastic surgery to make everything fit.

Bennett Sr saw the experiment as an “either die or give it a try”kind of situation. “I want to live. I know it’s a shot in the dark, but it’s my last choice. I look forward to getting out of bed after I recover,”he told the doctors at the UMMC before the surgery. His faith in medical science and his doctors saved him. So far, his body has not rejected the pig heart. But he still faces a long road to complete recovery.

Within days after the news of the historic surgery came to the public domain, Bennett Sr’s “worthiness”to receive a new heart was questioned. In 1988, he was convicted for stabbing a man named Edward Shumaker. According to the Washington Post, Bennett Sr., attacked Shumaker during a bar game after his then-wife sat on the latter’s lap. The attack left Shumaker paralysed from waist down. Bennet Sr was sentenced to ten years in prison. He was released from jail in 1994, after serving six years. Questioning the ethics of the second chance, Shumaker’s sister Leslie Shumaker Downey told the Washington Post: “He gets a second chance with a new heart—but I wish, in my opinion, it had gone to a deserving patient.”

The transplant team reacted to the controversy by saying that a patient’s criminal past could never be grounds for refusing medical care. “It is the solemn obligation of any hospital or health care organisation to provide lifesaving care to every patient who comes through their doors based on their medical needs,” the UMMC officials said.

heart-of-the-matter

Tue Jan 25 13:09:11 IST 2022

The news of a man getting a pig’s heart took the cardiology world by surprise. We had been hearing about xenotransplant (transplantation between different species) for a while now, but it was relegated to snide talk, rather than anything realistically achievable. In the die-hard (no pun intended) xenotransplant world, however, scientists have achieved a slow but definite progression of the science that led to the unique surgery.

So, how did the seemingly impossible come to fruition?

The heart is essentially a pump and, like any pump, it needs a supply of fuel and electricity to function. It is self-sufficient—there is an intrinsic pacemaker to generate electricity and wiring that conducts the electricity to different areas of the heart. The fuel supply is through tubes called arteries, which supply the blood through which the heart generates energy to function. Any abnormalities of the electrical system, or of the fuel supply, causes the heart muscle to dysfunction—a condition commonly referred to as heart failure.

There are also diseases that affect the heart muscle directly, and any malfunction of the valves (doors that separate the chambers) can cause a pressure load, causing it to weaken and result in a similar condition. The end result is decreased pump function and a reduced output, which affects the rest of the body. Every intervention done on the heart is essentially to preserve the pump function.

In the initial stages of heart failure, medications to improve the pump function generally work well. Pacemakers to control electrical issues, and stents and bypass surgery to improve the blood flow to the heart, helps keep the pump going. Unfortunately, sometimes because of either delayed treatment or progression of the underlying condition, the pump function continues to deteriorate, causing a condition called end-stage heart failure. This is the space where technology has made a huge impact in the past five years. From devices that stimulate the nerve supply of the heart to make it a more efficient pump, to a partial mechanical heart—a pump that is called a left ventricular assisted device (LVAD)—to a total mechanical heart.

The mechanical takeover because of organ shortage has gone from a temporary approach (LVADs were used as a bridge to heart transplant) to what is known as destination therapy, or a permanent approach instead of heart transplant. The LVAD is a mechanical pump that is inserted into the chest and takes over the function of the left side of the heart, which is responsible for pumping blood to the rest of the body. The device is powered by a driveline that comes out of the body and can be connected to power. There is also a battery pack that lasts 17 hours, making patients ambulatory. These patients do not have a pulse or the usual blood pressure (we love to watch the reaction of medical students and new nurses come running out of the room), as these pumps provide a continuous flow, unlike the pulsatile heart. Ironically the continuous pumps have been found more durable than the pulsatile pumps.

The survival for patients with an LVAD is about 70 per cent two years out. The good part of the mechanical pumps is that they are inert and patients do not have to be immunosuppressed, the bad part is they tend to clot off and lifelong blood thinners are the tradeoff. The total mechanical heart has not been as promising, and is still a bridge or a temporary solution, for patients awaiting a complete heart transplantation.

In what is arguably the biggest covered medical event in history, Dr Christiaan Barnard and his team performed the first human-to-human transplant in Cape Town on December 3, 1967. The patient survived for only 18 days, but the first step to the journey in transplantation was taken. With his rugged good looks, Barnard soon became an international celebrity and got a whole generation interested in cardiology. He built on the animal lab transplant research at Stanford University and was able to overcome the ethical issues about declaring patients brain dead. (There was a disagreement in the US about when a patient was truly dead. District attorneys in the US had threatened to arrest surgeons who harvested organs from “brain dead” patients.)

Today, cardiac transplantation is standard of care. There are 250 transplant centres in the US alone. There are two issues with transplantation. The first is procuring the heart from the donor and transplanting it before there is damage to the donor heart. The second is managing the rejecting response of the receiving body. The heart can be used for approximately four hours after it is explanted, cooled and placed in a solution, before irreversible injury sets in, and the immune response to the donor heart is suppressed by using immunosuppressive medicines. Since 2000, the median survival with heart transplant has been 12 years.

The limited donor heart availability has led researchers to pursue xenotransplantation, which would potentially give us an unlimited supply of organs. The problems with xenotransplant have been combating the immunity differences in different species, different blood groups and, of course, different infections. We have pretty much tried all possible animals, including apes, monkeys and baboons, but due to ethical concerns, availability, expense, slow breeding and infectious issues, we settled on the pig. Not just any pig, but a genetically modified pig. In 2016, researchers were able to delete all 62 copies of pig genes that code for porcine endogenous retrovirus by a process called CRISPR-based gene editing. There is only one company in the world, Revivicor, that breeds these pigs in a facility near Birmingham, Alabama. The pig heart used in this transplant had three genes that trigger attacks from the human immune system knocked out. They also added six human genes that help the body accept the organ by promoting normal blood clotting and preventing blood vessel damage. A final 10th modification prevents the size of the pig heart from growing.

These models have been tested by transplanting the pig’s heart into baboons- with survival two years out. Each baboon experiment costs approximately $5,00,000. Researchers are unclear on whether all these modifications are needed in pig to human transplants. In addition to the gene modifications, the patient is given a super strong immunosuppressant—an experimental antibody drug called KPL-404—which shuts down production of antibodies completely by binding to a receptor called CD40. The team from Maryland also used a novel nutrient solution to preserve the pig heart after it was harvested. The solution was developed by a Lund University surgeon, Stig Steen, and is composed of water, hormones such as adrenaline and cortisol and—get this—dissolved cocaine. The last ingredient as expected posed some legal issues to the team.

The US Food and Drug Administration granted humanitarian exemption for this one patient. The result of the surgery so far has been positive, though these are early days. While the unlimited supply of organs from animals seems to be an exciting concept (we are talking about other organs, too, such as kidney, liver and lungs), the ethical and regulatory steps still need to be in place. We may be opening a whole new can of worms with new infections that could mutate and transmit to the general population and a whole new set of cancers, not to mention the creation of a new genetically modified species to suit our needs.

We really don’t know what the future of xenotransplant is, but it does offer a ray of hope to the terminally ill. The advancement of science to the extent of altering another species is always fraught with risk, as we have come to painfully realise with the gain of function virology research. While these two areas are completely different, the fact remains that we are messing around with the natural order of things—something that, at the very least, needs a robust public debate.

While there has been a significant evolution on the mechanical aspect of heart failure treatment, the machines do not mimic the action of the heart, not to mention the mobility aspect for a patient. Apart from the immunosuppression, heart transplant patients live a normal life. There are a limited number of donors and healthy hearts available for transplantation. I have been called in the middle of the night to do an angiogram on a brain-dead patient, when there is a question of donor heart viability. There is a section on our license that qualifies us for donors in the event of a heart transplant.

Despite this, there is a huge shortage of donors, given the number of patients with end-stage heart disease. If (and it is a big if) we can use hearts from pigs, the supply of hearts could be potentially unlimited. Patients who are otherwise deemed borderline can be considered for heart transplantation and a second shot at life.

The human heart, apart from being a pump, is also responsible for secreting hormones that help regulate the functioning of the circulation. Whether a pig heart, albeit genetically modified, will be able to perform these functions in a human milieu is uncertain. The fact that the FDA green-lighted the first transplant is a sign that there has been extensive discussion about an upcoming clinical trial. These decisions do not happen overnight in a vacuum.

In an ideal world, we will be able to overcome the infectious and immunological barriers of xenotransplantation and there will be an endless supply of organs-hearts, kidneys and possibly lungs. But we don’t live in an ideal world, do we?

how-david-bennett-sr-became-the-first-pig-heart-transplant-recipient

Thu Jan 27 14:33:57 IST 2022

In a medical first, a 57-year-old heart patient in the United States received a heart from a genetically modified pig. The pioneering procedure, performed by surgeons at the University of Maryland Medical Center on January 7, could offer hope to thousands of patients who are waiting for organ transplants.

According to the US federal government's Health and Services Administration, 17 people die each day waiting for an organ transplant and another person is added to the waiting list every nine minutes. “About 20 per cent of patients on the heart transplant waiting list die while waiting for a transplant or become too sick to be good candidates for the complex procedure,”the American Heart Association said in a statement. In India, about 50,000 people suffer heart failures annually, but only 10 to 15 transplants are performed every year, as per the Union health ministry's Directorate General of Health Services.

“There are simply not enough donor human hearts available,”said Dr Bartely P. Griffith, who transplanted the pig heart into the recipient. He added that the breakthrough brings us one step closer to solving the organ shortage crisis. David Bennett, the recipient of the pig heart, is doing well and is being closely monitored.

Bennett was suffering from terminal heart failure and had been bed-ridden for six weeks leading up to the surgery. He was connected to a heart-lung bypass machine called extracorporeal membrane oxygenation (ECMO), which kept him alive. The transplant of porcine heart was the only option for the patient as he was ineligible for a traditional human heart transplant and for an artificial heart pump because of his life-threatening arrhythmia. “It was either die or do this transplant,”Bennett said.

The US Food and Drug Administration gave emergency approval for the procedure through its compassionate use programme. The programme gives a patient with a life-threatening medical condition access to an experimental drug or medical device outside of clinical trials when no satisfactory treatment options are available.

If successful, this could be a watershed moment in xenotransplantation—the use of animal organs, tissues or live cells for human transplants. Attempts at xenotransplantation date back to the early 1900s. There have been several failed attempts with pig, goat, sheep and monkey organs over the years. In 1963, Dr Keith Reemtsma, an American transplant surgeon, transplanted chimpanzee kidneys into 13 patients. Twelve of the patients died within four to eight weeks of the transplant; one patient survived for nine months. The first heart xenotransplant was performed by Dr James Hardy in 1964, using a chimpanzee heart, but the patient died within hours. In 1984, a baboon heart was transplanted into an infant girl known as Baby Fae, born with a fatal cardiac defect, but she died 20 days later.

However, pig heart valves have been successfully used to replace heart valves in humans for years. Pigs are considered a better choice for xenotransplantation than primates for several reasons. They are easier to raise, have large litters and achieve adult size within about six months. Pig organs are anatomically similar to human organs, and they are viable for genetic engineering. But the clinical use of these organs has been impeded because of the significant risk of xenozoonosis—the transmission of disease from an animal to a human through transplantation. Transplanting animal organs into the human body can also trigger severe immune reactions and immediate rejection of the organ, which can be potentially deadly.

However, newer technologies like cloning and gene editing have yielded tremendous success, making it more viable. “This is the culmination of years of highly complicated research to hone this technique in animals,” said Dr Muhammad M. Mohiuddin, a professor of surgery at the University of Maryland School of Medicine who established the cardiac xenotransplantation programme with Griffith and is its scientific/programme director. “The FDA used our data and data on the experimental pig to authorise the transplant.” Mohiuddin has more than 30 years of experience in xenotransplant research and has been successfully experimenting and transplanting pig hearts into baboons for years. In recent experiments, the primates have survived up to nine months and died from lung infection unrelated to the transplant.

The genetically modified pig that was used for the heart transplant was provided by Revivicor, a regenerative medicine company that is working to develop pig organs to transplant into humans. Revivicor is a US firm that spun off from PPL Therapeutics, the UK company that helped to clone Dolly the sheep, the first mammal to be cloned from an adult cell. “This transplant is groundbreaking, and is another step in the investigation of xeno organs for human use," said David Ayares, PhD, chief scientific officer, Revivicor.

The researchers modified 10 genes in the pig heart that was used for the transplant. Four genes were removed: three of them were responsible for producing antibodies that cause rejection and the fourth one to control the growth of the pig heart tissue once implanted, Mohiuddin explained. Six human genes that would make the immune system accept the new organ were inserted into the genome of the donor pig.

The research team also used an experimental drug developed by Mohiuddin and Kiniksa Pharmaceuticals, along with conventional anti-rejection drugs, to suppress the immune system and prevent the body from rejecting the new pig heart. Once removed, the pig’s heart was preserved until transplant in a new perfusion device. The device, developed by medical technology company XVIVO, preserves the donor heart at 8 degrees Celsius while continuously pumping an oxygenated “proprietary solution”through the organ.

Griffith told The New York Times that the “anatomy was a little squirrelly”. “We had a few moments of ‘uh-oh’and had to do some clever plastic surgery to make everything fit,”he said. “It creates the pulse, it creates the pressure, it is his heart. It’s working and it looks normal. We are thrilled, but we don’t know what tomorrow will bring us. This has never been done before.” The pig heart has been performing well so far after the experimental eight-hour procedure, without any immediate signs of rejection. Bennett is off ECMO; his new heart is pumping, and he is breathing on his own. He talked to his son who visited him. David, Bennett’s son, told the Associated Press: “He realises the magnitude of what was done, and he really realises the importance of it. He could not live, or he could last a day, or he could last a couple of days. I mean, we’re in the unknown at this point.”

Calling the procedure a game changer, Mohiuddin said: “If this works, there will be an endless supply of these organs for patients who are suffering. We have the technique of genetically modifying and if there is more tweaking required for modifying the genes, we will be able to do that and even customise the heart or other organs for the patient. The successful procedure provided valuable information to help the medical community improve this potentially life-saving method in future patients.” The heart transplant follows the efforts of surgeons in New York, last October, who temporarily attached the kidney of a genetically engineered pig, provided by Revivicor, to a brain-dead person who was being sustained on a ventilator. The organ functioned normally.

While most of the medical community is excited about the procedure’s potential for reducing wait times and easy availability of animal organs for human transplants, some have raised ethical questions as well. Animal rights groups like PETA oppose xenotransplants and the use of animal organs for human transplants. PETA condemned the surgery both on the grounds of animal cruelty and the potential to transmit animal viruses to humans. “Animal-to-human transplants are unethical, dangerous, and a tremendous waste of resources that could be used to fund research that might actually help humans,”the organisation said. “The risk of transmitting unknown viruses along with the animal organ are real and, in the time of a pandemic, should be enough to end these studies forever. Animals aren’t tool sheds to be raided but complex, intelligent beings.”

This is unknown territory, and the doctors are not sure how well the pig's heart will survive in the human body. The one-year survival rate of human heart transplants is 91 per cent, according to the American Heart Association. On average, heart transplant recipients live another 12 to 13 years. “Rejection of the organ can occur any time after transplant,”Griffith told STAT, a leading medical news website. The immunosuppressive medications used to prevent rejection also carry risks. “The intensity of immune system suppression required is higher with a xenotransplant than with a traditional transplant from a human donor,”he said. “We are proceeding cautiously, but we are also optimistic that this first-in-the-world surgery will provide an important new option for patients in the future.

eye-on-the-enemy

Wed Dec 22 15:23:46 IST 2021

Nature wants you dead. Not just you, but your children and everyone you have ever met and everyone they have ever met; in fact everyone”. British researcher John S. Tregoning’s Infectious: Pathogens and How We Fight Them is a book that starts with this scary statement. And, as we proceed with its pages, we would encounter some scary science facts, too. However, Tregoning, who is currently a reader in respiratory infections at Imperial College, London, makes sure to explain these hard ideas in simple language—with abundant use of witty analogies—for the readers.

The book is a product of the pandemic. Tregoning started working on it in March 2020—a stage when total deaths from Covid-19 were less than 3,000. By the time he reached the last chapter, the toll reached 2,230,000. This pandemic timeline from March 2020 to January 31, 2021, could be seen in the book.

“I have been working as a research scientist studying infectious diseases for the last 20 years. I have spent a lot of that time trying to understand how and why we get sick from airborne pathogens. However, it was only in 2020, at the beginning of the Covid-19 pandemic, that I really appreciated the thirst for knowledge about viruses and infections,” says Tregoning. “This was an opportunity to share what I have learned with a wider audience to help people understand what has just happened and what they can do to protect themselves against future outbreaks.”

The book rightly notes that we are in a far better position to fight infections compared with our past generations. “As a result of science’s success, even during a full-blown pandemic most of us will die of non-infectious causes, in stark contrast to a hundred years ago, when many more people died of infections than other causes. The tipping point came somewhere in the 1950s when the cumulative effect of access to clean water and increased vaccine coverage changed our relationship with microorganisms,” it says. And, the book celebrates this massive success of the medical field in the past 100 years.

Infectious is broadly divided into two parts. Part 1 discusses the science behind infections and how the body’s immune system fights them. It also discusses the various diagnostic tools used to identify the culprits behind infections. In part 2, Tregoning offers bits of advice for the prevention, control and treatment of infections.

One long chapter in part 2 is about how vaccines work. Tregoning notes that vaccines are based around the simple principle that our immune system can remember things it has seen previously. And, along with explaining the impact of vaccination drives, Tregoning offers a commentary on the problem of misinformation campaigns against vaccines. “I think it is important not to over-promote anti-vaxxers; they are highly vocal, but are a very low proportion of the population,” he writes. He also explains how Covid-19 vaccines were brought out in record-breaking time. “This was achieved through massive investment, both in the research to generate the new candidates and in the manufacturing,” says the book. The vaccine makers took a huge financial risk, too: “To coordinate the delivery of the vaccine with the end of the clinical trials, doses of vaccines were made even before it was known if they were safe or effective, some of which will no doubt end up going down the drain.” He ends the chapter saying that vaccines are “a success story of human science and innovation, up there with the moon landing, Swiss army knives and the internet”.

It will be wrong to tag Infectious as a book about medical facts alone. It offers some very relevant sociological observations, too. For instance, it talks about “the sorry state of affairs surrounding the Covid-19 pandemic” in some quarters. The writer says that the fear factor, the absence of actual information about the virus (at least in the first phase) and the disruption the world had witnessed in a short span led to the deluge of fraudulent theories about the Covid-19 pandemic.

The book offers some interesting historical anecdotes, too. For instance, Tregoning unearths a rare connection Nobel Prize-winning British chemist Dorothy Hodgkin had with the Iron Lady of Britain–Margaret Thatcher was once a student in Hodgkin’s lab.

The book also talks at length about the development of antibiotic, antimicrobial, anti-viral and anti-parasitic drugs, and also about an impending “post-antibiotic apocalypse”. Says Tregoning: “With climate change and the changes in the way that people live and interact with the environment, it is certainly possible that there will be more pandemics in the future. We are living through another, slower-burning pandemic—that of antibiotic-resistant bacteria. These are pathogens that are not treatable with our existing drugs.”

The researcher notes that continued investment in basic research and understanding how the body fights infections are vital to deal with these threats. “We also need investment in national-level manufacturing for vaccines and drugs, which will help achieve greater equality in how infectious diseases are controlled,” he says.

Infectious: Pathogens and How We Fight Them

Dr John S. Tregoning

Publisher: Simon & Schuster

Pages: 374

Price: Rs699

dr-monalisa-sahu-on-how-we-can-protect-ourselves-from-infections

Thu Dec 23 15:09:25 IST 2021

Infections and infectious diseases are a major burden to our society.

Several microorganisms—from bacteria to viruses to fungi and parasites—are causative agents of these infectious diseases. Certain diseases are endemic to particular regions; others lead to an epidemic, affecting a large number of people during a certain period of time in a particular geographical area; and a few infectious diseases take the form of the pandemic, affecting several continents simultaneously, like Covid-19. There are several other agents, known as vectors, which serve as the means of spreading the pathogenic organisms among human beings and animals.

To keep oneself protected from these diseases, one needs to have a clear idea about the various common infections prevailing in that area or region, more so during different times of the year.

For example, during monsoons, one needs to be aware of infectious diseases during that time, like malaria, dengue, scrub typhus, leptospirosis; the agents causing the disease, their mode of acquisition, the disease manifestations, signs and symptoms so that they can suspect the disease early in its course, before the onset of complications and approach the health care facilities for timely management.

They should also be aware of the measures to be taken to prevent the transmission of diseases and break the chain of disease transmission, like maintaining environmental cleanliness to protect against dengue, malaria, chikungunya; avoiding consumption of contaminated food and water to protect from diarrhoeal diseases, dysentery, typhoid; maintaining hygiene to protect against bacterial and fungal infections of the skin; following proper hand-washing and cough etiquettes to protect from respiratory illnesses like influenza, Covid-19 and TB.

They should also keep themselves updated about the outbreak of any infectious diseases in their region and state so that they can take adequate measures as recommended by health authorities. And they should get vaccinated to protect themselves from diseases like hepatitis B, appropriate for their age and health conditions, after consultation with an infectious disease specialist.

Earlier, there were limited diagnostic modalities for the diagnosis of various infectious diseases, but with advancement of medical science and technology, a number of newer diagnostic modalities are available. Many point-of-care tests are also available for a number of infectious diseases, which help us in the early detection of disease, even in remote areas. There are newer molecular diagnostic tests that help us in rapid detection of pathogens, in tracing the outbreaks, and in predicting future outbreaks. There are certain testing modalities, known as biomarkers, which help us in the early detection of diseases, and in monitoring the response to treatment.

There has been a lot of advancement in radiological imaging, like CT scan, MRI, PET scan, which help in obtaining samples from remote, inaccessible areas in our body by interventional procedures which, in turn, helps to make an early diagnosis.

Sahu is consultant, infectious diseases, Yashoda Hospitals, Hyderabad.

how-the-body-responds-to-an-infection-has-changed-dr-rohit-shetty

Thu Dec 23 15:05:45 IST 2021

Infections across different parts of the body have seen considerable change in how a pathogen infects and creates challenges for the doctor.

In the last decade or so, we have seen a change in dietary patterns like food poor in proteins, omega 3 fatty acids and fibre. New infections have crept in because of changes in our diet. Gut microbiome is one of the most important factors that controls inflammation in our body. It changes as a result of stress, changes in diet and irregular or poor eating habits. The body fighting externally because of a bacteria has changed because of the changes in your diet and gut microbiome. When the gut microbiome is altered, many things could change, from mood swings to immunity.

Nowadays we are less exposed to sunlight. We stay indoors too long. That changes your body’s immune system.

Because of the pandemic, our lifestyle has become more sedentary. We don’t exercise. There are a lot of changes happening in every part of our body, in every cell of our body. Our lifestyle alters the body’s immune response. If your body is strong and healthy, your response to a particular bacteria, virus or fungi is different. Black fungus was more prevalent in Covid-19 patients because their body’s immune response was weak. It is important that we all make changes to our lifestyle.

Shetty is vice chairman, Narayana Nethralaya, Bengaluru.

As told to Mini P. Thomas

how-we-fight-the-many-infections-around-us

Sun Dec 26 11:42:47 IST 2021

Reenu Jennifer had a bad cold recently. “I had symptoms like sore throat, headache and stuffy nose, which made it hard for me to breathe,’’ recalls Jennifer, a teacher at St Joseph’s Boys High School, Bengaluru. She was unable to do her daily chores and was grumpy and cranky. “Due to the current pandemic situation, I chose to work from home until I recovered. I didn’t want to expose others around me to the infection,’’ she says.

Homebound, Jennifer kept gargling and taking steam inhalation. She also tried home remedies like honey ginger tea, which helped ease her symptoms.

Jennifer wonders why medical science is still not able to find a cure for common cold, the most common infectious disease among humans. Dr Swati Rajagopal, consultant, infectious diseases and travel medicine, Aster CMI Hospital, Bengaluru, has the answer. “Since common colds are caused by rhinoviruses, the challenge is the number of circulating strains or types of the virus. There are at least 160 aero types or strains of the virus, so unfortunately we do not have one master key to cure the virus. It is virtually impossible to create one vaccine or one drug against the 160 types.’’

In the future, we can successfully evolve a method of targeting the immune response against the structure common to all subtypes, says Rajagopal. “That is when we can offer protection against all the subtypes,” she says.

Infections have marched in lockstep with us in our race to modernity. The world is still reeling under a pandemic, and Omicron, the new Covid-19 variant, has cast a dark shadow on our hopes of returning to a normal life. “The vaccine is short-lived. The antibodies and protection do not last long and hence you have to keep taking the vaccine. Also, infection with the virus causes long-term problems in 40 per cent of those who got even a mild infection. We are going to live with this for a long time,’’ says a top Emory virologist. “The current viruses are not vaccine-escape mutants. They are coming. I hope I am wrong.’’

India has a disproportionately high burden of infectious diseases. Common infections include upper respiratory infections, influenza, diarrhoea, pneumonia, urinary tract infections, worm infestations, infections affecting the skin and soft tissues like boils and abscesses, tuberculosis, dengue, malaria, chikungunya, typhoid fever and HIV/AIDS. It is estimated that drug-resistant infections will result in 10 million deaths a year worldwide by 2050, a significant portion of which will occur in India. Drug-resistant tuberculosis has already been a major public health concern in the country, despite the government’s efforts to eradicate TB by 2025.

Veteran virologist Dr Jacob John is appalled with the way India deals with its infectious diseases. “Take, for instance, TB. How many people have TB in the country? WHO tells us the numbers. If you ask any doctor, he will say the numbers given by WHO are an underestimation. We don’t have a policy to control cholera or typhoid fever. India is home to infectious diseases and yet we don’t have a policy,’’ he says. “We are very tolerant. We tolerate filth, plastic, bacteria, viruses and diseases.’’

In the west, if a person is infected with cholera, they make sure the system is cleared to control the infection, says John. “A patient with an infectious disease receives the same kind of treatment in India and the west. However, there is a huge difference in the way the public health system works. In European countries, that one patient will result in a community investigation. They trace the origins of the outbreak and take necessary measures to reduce the transmission. On the other hand, in India we will add one statistic point and move on,’’ says John, who describes himself as an unwelcome virologist who brings up inconvenient facts.

The pandemic has changed everything. The changes in our susceptibility to infections are evident in the outpatient department of our hospitals. “People at large are using masks. As a result, respiratory infections have come down,’’ observes Dr Mahendra Dadke, head of department, internal medicine, Jupiter Hospital, Pune. “Usually the paediatric OPD is full of respiratory infections. But as schools were closed, the incidence of those infections came down.”

But we can’t breathe easy, owing to Omicron. “Omicron is a mutating virus. It is an unusual mutational variant, having many mutations in one variant,” says John. “It is a leapfrog mutation, not step by step mutation. The mutations look as if the variant had been mutating for a long time.” The virus now is more virulent and spreads faster. Also, it escapes previous immunity.

People who get Covid-19 are found to be more prone to other infections like fungal infection. The high incidence of mucormycosis in the country is attributed to the rampant use of steroids in Covid-19 patients. Moreover, Covid-19 affects pancreatic beta cells. So the incidence of diabetes or high blood sugar has gone up in the population, which, in turn, causes other infections like urinary tract infection and skin infections. “Sugar is a good medium for bacteria to grow,” explains Dadke.

Even something innocuous as a spinach or lettuce salad can sometimes lead to infections. Eating unwashed or badly or improperly cooked food can cause neurocysticercosis, an infection of the brain and spinal cord. “Though the infection was considered to be common among non-vegetarians, especially those who eat pork, later we came to know that it is more commonly seen among vegetarians. That is possibly due to the use of vegetables that are contaminated with the eggs of tapeworms,’’ says Dr P. Satish Chandra, adviser and senior consultant, neurology, Apollo Hospitals, Jayanagar, Bengaluru. These eggs will get into the body through consumption of unhygienic food. It travels through the blood and could get lodged anywhere in the body. If it lodges in the brain or spinal cord, it is called neurocysticercosis, explains Chandra, who is also former director and vice chancellor, National Institute of Mental Health and Neurosciences, Bengaluru.

Neurocysticercosis affects the nervous system in different ways and the manifestations may vary. The commonest manifestation is seizure. If it occurs in the spinal cord, the patient may experience weakness in limbs.

But that is not as common as, say, urinary tract infections (UTIs) that affect both men and women. Women are at greater risk of UTIs than men. A recent study published in Therapeutic Advances in Urology says that 50-60 per cent of women experience UTIs at least once in their lifetime.

Do not ignore symptoms of UTIs, warns Dr Prathima Reddy, director, lead obstetrician and gynaecologist at Sparsh Superspeciality Hospital for Women and Children, Bengaluru. UTI, if left untreated, could lead to inflammation of the kidneys and septic shock, a potentially fatal medical condition.

Bond girl Tanya Roberts, fondly remembered for her performance in A View to A Kill as well as Charlie’s Angels died of a UTI in early 2021. Roberts developed sepsis after the UTI. The infection had spread to her “kidney, liver, gallbladder, and then bloodstream”, leading to her death.

In pregnant women, UTI could result in complications that can affect both the mother and the baby. “UTI causes growth restriction and reduced weight of the baby. People often resort to self-medication for UTI, which in turn can lead to health complications. Most frequently, we find that people start antibiotics by themselves,’’ says Reddy.

It is always better to see a doctor and get a urine culture and sensitivity test done, she says. “The urine culture report comes back to us in about three days,” says Reddy. “Meanwhile, if the symptoms are really bad, we start the patient on antibiotics and change the medicines later once we get the reports. The urine culture test will help the doctor know whether the antibiotics prescribed for the patient are the right ones. UTI can affect women of all ages—teenagers, middle-aged, pregnant and post-menopausal women.”

Symptoms of UTI include a burning sensation and pain while passing urine, increased frequency of urination and presence of blood in urine. The patient may also experience chills with a fever. “If any of these symptoms start, drink plenty of water, see a doctor, get a urine test done and start an antibiotic prescribed by them,” says Reddy.

Some infectious diseases like malaria and typhoid, though, share similar symptoms, making diagnosis harder. Manu Leen from Kochi had symptoms like fever, headache, nausea and diarrhoea. As her condition worsened, she was hospitalised. Malaria was suspected, and she was given anti-malarials. The test results took too long, she recalls.

A diagnosis of typhoid was confirmed later. “I was going through tremendous pain—severe headache and body pain,” says Leen. “I would scream in pain and my family thought I wouldn’t survive. I couldn’t eat anything.”

Leen survived the illness, but the misdiagnosis, medications and prolonged hospital stay took a heavy toll on her health.

She had no relapse of typhoid, but she lost 20kg and had excessive hair fall. She also had persistent body aches that lasted around three months.

Fever is a common symptom of most infections. It may or may not be associated with other manifestations such as cough, cold, diarrhoea, skin rash and body ache. Most infections are viral and are self-limiting. “Hence patients can take symptomatic therapy for the first 2-3 days with antipyretics, cough syrups, oral rehydration solutions (but never antibiotics) and seek medical help if they are not better by third or fourth day,’’ explains Dr Tanu Singhal, consultant, paediatrics and infectious diseases, Kokilaben Dhirubhai Ambani Hospital, Mumbai. “However, if there are risk factors such as extremes of age (very young or very old), immunocompromised state, underlying diseases or excessive fatigue, weakness, dizziness, lethargy, breathing difficulty, low urine output, persistent headache and vomiting, they should report to emergency services immediately.”

Cancer patients undergoing chemotherapy and radiation are more susceptible to infections because of their immunocompromised state, says Dr B.S. Ajaikumar, chairman and CEO, HCG Group of Hospitals, Bengaluru. “They may have infections without any fever,” he says. “Their body's ability to fight infections is lower as their immunity levels are low. We usually do what we call immunity scoring. Based on that, we decide which patients are likely to get infections and we take lot of preventive measures, apart from normal hand washing and masking. We also make sure these patients get some oral antibiotics before we administer them chemotherapy.” The infection rate is higher in patients undergoing chemotherapy than radiation.

Infections come through the water we drink, too. Parvathy, 37, from Thurputhallu, a coastal village in west Godavari district of Andhra Pradesh, earns a living by cleaning and selling the fish her husband catches.

One day, she complained of fever, continuous vomiting and diarrhoea. Medical investigations by the village health care provider revealed that she had jaundice. “The likely cause was the water that she had been consuming,’’ says Dr Swati Subodh, cofounder of 1M1B foundation. The foundation’s Project Auxilia focuses on health care of fishermen in rural Andhra Pradesh.

In Thurputhallu, clean water is still a luxury many cannot afford. Fetching water from a public tap has been part of Parvathy’s daily grind ever since she got married. Living on land surrounded by the sea, she always knew the water in her village was not fit for drinking. However, like most women in her village, she would use it for drinking and cooking. The smell and purity of the water bothered her, but she had no access to other sources.

Parvathy’s long road to recovery took a heavy toll on the family’s income. She was not able to work for a month.

“Since then Parvathy boils her water, as much as possible,” says Subodh. “However, the additional fuel cost incurred for boiling the water does not make this a likely long-term solution to her.”

Infections add to rural India’s health woes. Water-borne diseases like cholera, jaundice, diarrhoea and hepatitis are high in coastal communities of west Godavari, says Subodh. Project Auxilia encourages fishermen to use cost-effective charcoal-based water filters.

Infections don’t spare newborns either. Preterm or low birth weight newborns are at increased risk of infections. Pneumonia, sepsis, tetanus and diarrhoea are some of the leading causes of neonatal deaths in India. Infection in babies born less than 72 hours ago is usually caused by the maternal genital tract, says Dr Amit Gupta, chief neonatologist and paediatrician, Motherhood Hospital, Noida.

“Genital tract infection is common during pregnancy and can result in neonatal infection,” he says. “Newborns can also get infected owing to contaminated hospital surroundings. Unhygienic hands play a major role in community-acquired infections.”

Fortunately, breast milk comes to the rescue of infants as it contains antibodies that can fight infection. “Antibodies are present in high amounts in colostrum, the first milk that comes out of the breasts after birth,” says Gupta. “Breast milk is also said to provide other essentials like proteins, fats, sugars and contains white blood cells that work to fight infection in many different ways. It is also said that breastfeeding sets the stage for a protective and balanced immune system that helps recognise and fight infections and other diseases even after breastfeeding ends.’’

Moreover, advancements in diagnostics and treatment offer much hope. For tackling infections, the need usually is quick diagnosis and accurate treatment, which, in general, reduces mortality, says Dr Neha Mishra, consultant, infectious diseases, Manipal Hospital, Old Airport Road, Bengaluru.

“If we look at bacterial infections, it used to take as long as 72 hours to know the cultures (isolating bacteria in labs),” she says. Now, it is possible to not only classify the type of organism but also the type of mutation in much lesser time, thereby enabling a quick decision on the therapy to be provided. “Inventions like MALDI-TOF and BACTEC have made speciation easy and quick, while modalities like Carba gene XPERT give us an answer regarding mutation within an hour’s time,” she says.

Techniques like PCR testing have made it easier to diagnose viral infection and that too on any type of sample, be it blood, cerebrospinal fluid, pleural fluid or urine, says Mishra. “Such PCR techniques have been used to diagnose bacterial and fungal infections as well,” she adds.

Not only diagnostics, the treatments have also taken a leap. “For instance, in HIV, the type of drugs available—dolutegravir, bictegravir—now has made the disease easily manageable,” says Mishra. “The good news is that such changes have been implemented even in government programmes, making these drugs more accessible and available to all. These changes have taken HIV/AIDS from a universally fatal disease to a chronic health care issue.”

A lot of advancements have taken place in treatments for lung infections, too, especially tuberculosis. Thirteen-year-old Shourya Akshata Mangaonkar from Mumbai experienced severe stomach ache during Diwali. “We discovered that she had TB,’’ recalls Akshata Mangaonkar, her mother. It was a highly complex and critical case, she recalls. Mangaonkar was treated at Kokilaben Dhirubhai Ambani Hospital, Mumbai. She is now recuperating at home.

Earlier patients with TB used to be given blanket therapy or empirical medication. “We are getting the reports faster now,” says Dr Arvind Kate, chest physician and pulmonologist, Zen Multispeciality Hospital, Mumbai. “In the last two years, there are newer diagnostic modalities like respiratory BioFire that are available. They have made diagnosis faster and more accurate. We are more targeted now in terms of our therapies. We are more selective in our antibiotics. This helps to prevent antibiotic resistance. It helps save costs, too.”

Giant strides have been made in biomarker science, too. “Biomarkers help us understand in what direction patients are going,” says Kate. “Some antibiotics are very costly and patients end up spending Rs10,000-Rs15,000 a day just on antibiotics. With biomarkers, we know whether the antibiotics work and if the infection is under control.”

Abhishek Salagre, 29, a chartered accountant from Mumbai would vouch for that. He was diagnosed with TB on his 24th birthday. “I was doing my chartered accountancy course then. My schedule was so hectic that I barely had time to eat,” he says. “I would often skip my lunch and dinner and my immunity came down drastically.’’

When TB manifested as chest pain, Salagre consulted a doctor. It was found that both his lungs had been affected. Salagre had a hard time managing his studies and fighting the potentially serious infection. To add to that, his treatment was delayed as the doctor was using traditional methods. “I took the TB medicine for 18 months. Then I met Kate and in three months, my treatment got completed,’’ says Salagre, who is getting married to his girlfriend.

Antimicrobial resistance is a huge challenge in the treatment of TB. Bacteria and bugs which used to be easily treated with a certain level of anti-bacterials are now showing tremendous resistance to them. This is the world’s major challenge today, especially in ICUs, says Dr Rohit Shetty, consultant, cornea and refractive surgery and vice chairman, Narayana Nethralaya, Bengaluru. “We use the antibiotics so much that the bacteria become tolerant to them,” he says. “A huge chunk of antibacterials of the 1980s and 1990s are no longer sensitive to a lot of bacteria. We have to keep building new drugs. After a few years, the same drug won’t work because of the antibiotic abuse.”

There has been a rise in multi-drug resistance over the last 10 years. “Bacteria that are resistant to certain types of antibiotics make treatment of TB all the more challenging. New medications are being introduced by the government to tackle this problem,’’ says Kate. Antibiotic misuse is common in outpatient practice, which contributes to antimicrobial resistance.

Jael Varma has never taken antibiotics. The Bengalurean hardly falls sick. “I eat basic homemade food. I never take tablets unless it is a dire necessity,” says the poet. “I stay away from toxicity (both situations and people) and I always drink hot water.” Dancing and practising mindfulness keep her happy and healthy. Varma says our body is supremely intelligent. “It always tells us what is wrong,” she says. “All you have to do is pause and listen.”

For Bengaluru-based media professional Barkha Chawla, science and nature go hand in hand. That is why she has no qualms in letting her two-year-old—Jeeana—play in the sand. Chawla believes that a little exposure to the environment helps children build a strong immune system. “I always allow her to go out in the nature,” she says. But she also abides by the ‘prevention is better than cure’ adage, and so adds that if there is enough scientific proof that “a vaccine will save my child from an array of infections and life-threatening diseases, I will immunise my child without a second thought”.

Vaccines are the most powerful weapons in our arsenal in the fight against infectious diseases. Vaccine hesitancy, says John, is a major public health challenge, especially in rural India. “People don’t trust the system,” he says. “They think the government is covering up adverse reactions. The truth is we don’t have a system to monitor adverse reaction. It is a systemic failure.’’

In the fight against infections, more dramatic than treatment advances are advances in prevention of infections through vaccination, says Singhal. “Small pox is the most striking example. Apart from smallpox, the incidence of polio, diphtheria, tetanus, whooping cough and measles have declined dramatically due to widespread immunisation,” he says. “On the flip side, we still await effective vaccines against tuberculosis, malaria and dengue.”

We live in a world full of microbes. Pathogenic microbes are present in the air we breathe and the food we eat. Germs lurk in bathroom light switches, refrigerators, microwave handles and stove knobs. Public restrooms are breeding grounds for E. coli, streptococcus, hepatitis A virus and the common cold virus. Cash and pillows have more germs than we think. If you are reading this story on your phone, don’t forget to wash your hands before you snack. A study conducted by Insurance2Go, a gadget insurance provider in England, shows that smartphone screens have three times more germs than a toilet seat.

Getting rid of germs in our environment is an insurmountable task though. All we can do is maintain hygiene, learn to coexist with bugs and protect our body against infections.

christian-eriksens-cardiac-arrest-shows-risks-faced-by-overworking-athletes

Sun Nov 28 12:57:29 IST 2021

Denmark vs Finland. The Euro 2020 match this June between the Nordic countries was supposed to be one of the low-key fixtures of the group stages, and yet it turned out to be the most talked about.

The world watched in horror as Danish star midfielder Christian Eriksen collapsed face first in the 43rd minute of the game and players of both teams rushed to revive him. He had suffered a cardiac arrest.

German doctor Jens Kleinfeld was by his side within seconds, performing cardiopulmonary resuscitation (CPR). An electric shock from a defibrillator worked and Eriksen opened his eyes after 30 seconds.

“Are you back with us?” Kleinfeld asked Eriksen.

“Yes, I am back,” Eriksen responded feebly. “Damn, I’m only 29 years old!”

The player’s words echoed what was on everybody’s mind: how could a fit athlete at the top of his game suffer a cardiac arrest mid-match?

As Eriksen was transferred to a hospital and news trickled in of his health improving, possible reasons for the sudden attack were being spelled out by physicians.

Eriksen was playing in his 66th competitive fixture in exactly one year since football restarted after a break because of the pandemic. Just a few hours before Denmark’s first Euro 2020 game, FIFPRO—a global union of professional footballers—had reiterated its long-standing view that players were under increasing pressure because of a congested schedule.

The Dane’s former cardiologist, Dr Sanjay Sharma of St George’s University, London, had told The Mail that Eriksen had no prior history of heart issues. He had been screened regularly since 2013 at football club Tottenham Hotspur and the tests always returned normal.

The doctor’s inference was that FIFPRO is right. The relentless schedule can take its toll on athletes, though it may not seem like it. The fatigue of extended periods in a bio-bubble with little rest between tournaments was also cited as one of the reasons for the Indian cricket team’s dismal show at the T20 World Cup, as players like Virat Kohli voiced the need to “manage his workload”.

Six days after the unexpected attack, Eriksen walked out of the hospital. He is fitted with an implantable cardioverter-defibrillator in his chest, a device that addresses irregular heart rhythms. He has been undergoing rehabilitation in Denmark.

Though he has been given the green light to resume light physical activity, his doctors have told him that it would take at least a year of monitoring him to decide if he can resume high-intensity training and competitive football.

For now, the Italian league, where Eriksen plays domestic football, does not allow players to participate with devices like the ICD fitted to them. His club, Inter Milan, has since prohibited him from returning to action for the remainder of the ongoing season, which ends in May 2022.

Doctors have told Eriksen that follow-up tests would tell whether the ICD would be a permanent fixture for him or whether it can be removed by next year. It is uncommon for footballers to play with ICDs, but not unheard of. Dutch defender Daley Blind was fitted with an ICD in 2019 after being diagnosed with heart muscle inflammation, but he has continued playing for both club (Ajax) and country.

Eriksen might be back on the pitch next year, perhaps in a different domestic league where ICDs are allowed. But the concerns remain of overworking professional athletes as more competitions are squeezed into their calendar every other day.

moderate-exercise-is-key-says-dr-aashish-contractor-reliance-foundation-hospital

Sun Nov 28 12:58:39 IST 2021

Over the past few months, there have been a number of sudden cardiac deaths in relatively young, and seemingly healthy individuals. This has caused great consternation, especially among those who exercise. The fear has been exacerbated, since many of these celebrities were regular exercisers. And that has raised the question of ‘excessive exercise’ and its potential harm, instead of benefit. As is the wont these days, social media has been on fire with advice from various sources, which have increased rather than allay the fears.

Exercise and the heart

Studies done over several decades have clearly shown the benefit of regular exercise and physical activity to reduce the risk of heart disease. Exercise can benefit the heart, directly and indirectly. Direct benefits include helping the heart muscles get stronger and pump more blood per heart beat as well as the ability to withstand abnormal heart rhythms better. Indirect benefits include control on blood pressure, sugar, cholesterol and body fat, all of which reduce the chances of a heart attack.

Exercise and sudden cardiac death

There is nothing more dramatic and scary than an athlete having a cardiac arrest during play, or immediately after exercise. It also generates more fear than the larger number of people who have the same event while, say, watching TV, working or even during sleep. Research has suggested that the commonest causes of these deaths differ in those who are young (below 35 years) versus those who are older. At this point, it is also important to distinguish between a heart attack and a cardiac arrest. A heart attack, or myocardial infarction, occurs when a blockage in the coronary artery ruptures and blood flow to the heart muscle is cut off. Usually, one third of heart attacks lead to cardiac arrest and death. As the name suggests, a cardiac arrest occurs when the heart stops beating. This can happen because of several causes, with heart attack being one of them. In the younger age group, a condition known as cardiomyopathy is the commonest cause of cardiac arrest and death, while in the older group, a heart attack is the commonest cause of death.

Can you exercise too much?

On social media, it is common to attribute some of the deaths in young and fit persons to excessive exercise. It is important to keep in mind that sudden cardiac death very rarely occurs in someone with a healthy heart. Exercise may be the trigger to have a cardiac event in individuals who have undetected or silent heart disease, but it is almost never the cause. In terms of a single episode of exercise, there is no absolute upper limit defined, and it all depends on the individual’s training level. One should avoid high levels of unaccustomed exertion, the rule of thumb being that any given bout of exercise should not be more than a ten per cent increase from previous bouts. Environmental conditions should also be considered, and outdoor exercise should be avoided in extreme weather conditions, as this is one scenario where even a healthy person can suffer serious consequences.

Another way to look at ‘too much exercise’ is the overall volume of exercise accumulated over the years. Here, the research has shown that a very large volume of exercise over several decades might cause some changes in the heart muscle, as well as accumulation of calcium in the coronary arteries. At this point, the amount of exercise has not been defined, and the consequences of these changes have not been fully understood. However, it is well known that to reap optimum health benefits, moderate exercise is the way to go.

How does one reduce the risk?

1. Pre-participation health check

2. Paying heed to warning signs

3. Sensible and appropriate training programmes

Pre-participation health check

There is no definite testing protocol that can completely rule out risk, but we can certainly minimise it. The first step is to evaluate your cardiac risk factors, which include age, family history, smoking, high cholesterol, hypertension, diabetes and obesity. In my experience, if there is a cardiac death in a close family member, below the age of 60 years, we need to be more watchful. Review your cardiac risk factors with your physician, who will decide on the need for further testing. For most people, there should not be any need for further testing before starting with a moderate exercise programme, such as brisk walking.

Warning Signs

Several studies have shown that individuals who experienced cardiac events during exercise often had mild warning signs and symptoms prior to the event, which they ignored. The most important of these are:

1. Chest discomfort, which may present as acidity or heartburn

2. Increasing fatigue

3. Unusual breathlessness with usual levels of exercise

Appropriate training programmes

All exercise programmes should progress gradually. Most arrests and deaths occur in individuals who participate without adequate preparation or those who ramp up their training exponentially. At the end of vigorous physical exertion, it is important to cool down appropriately, since reduced blood supply to the heart may be exacerbated by abrupt cessation of activity.

Take-home message

Regular exercise has great health benefits. It is important to start at a low level and progress gradually to a moderate level. If you would like to engage in vigorous exercise, it would be prudent to review your risk factor profile with your doctor, before doing so. During exercise, if you feel any discomfort or unusual symptoms, stop and get yourself evaluated.

The writer is director of rehabilitation and sports medicine at the Reliance Foundation hospital, Mumbai.

train-your-mind-says-grandmaster-akshar

Sun Nov 28 12:59:30 IST 2021

Staying healthy is a very important part of living. We may be able to forego a lot of other things, but health is something we need if we want to truly enjoy life. And when it comes to the topic of over-exercising, then you must be able to work your fitness routine also into a system. We all have different capacities in terms of stamina, strength, flexibility, and we should learn to slowly build our capacity.

Rest and recover

Looking at this from the perspective of yoga, there is an important point to keep in mind. Yoga covers all aspects of health, which includes the physical, mental as well as spiritual health. Therefore, while exercising it is important that you invest as much in your spiritual and mental health as you do in your physical fitness.

Death is inevitable and no matter what you do you cannot escape it. Rest and recovery are an important process in fitness. Not only does your body need time to heal and recover, but you must also pay close attention to your mental wellbeing. Find enough time for relaxation and also indulge in activities that are good for the mind, body and spirit—whether it is reading a book or finding a hobby that helps you increase your creativity. These are all different ways to de-stress the mind, which then helps you to become a healthy individual.

Do not suppress emotions

If you carry stress, anxiety and any other form of repressed or suppressed emotions, this could harm you in the long run. This is because it spills over in any activity that you do. By finding enough time for relaxing, you are ensuring that the body and the mind are able to recharge and rejuvenate in order to continue with anything that you are pushing yourself to do.

Self-awareness

Most important, you must be aware of your own mental wellbeing and health. When you are happy and calm, this also translates into the physical body. If you perform any activity while holding a lot of stress within you, then it invariably affects your productivity and creativity. Most of us lead with the mind and the mind can be a tricky companion. The mind can lead us either towards goodness or towards harm. If we are able to maintain a state of mental wellbeing that is beneficial for us, then we can easily progress towards growth, prosperity and harmony. But if we are full of fear, worry or negative emotion, then all our actions will be led by these emotions, causing us harm and self destruction.

Find what works for you

Everybody deals with different kinds of situations in life, and there are no two people with the exact same problems. Therefore, the solutions also have to be different. Keeping this in mind, it is essential that you analyse how you deal with troubling situations or challenges that life throws at you. If you are a person that tends to hold everything inside you and are unable to express how you truly feel, then in the long run this builds up, causing a lot of physical problems, like lifestyle diseases. Thus, you must make a conscious effort to seek out people or activities that help you to open up and express yourself freely.

Last but not the least, practise yoga and also consume a nutritious diet. Find a reasonable balance in your life with work and play. Rest as well as you push yourself hard.

dr-rajeshwari-janakiraman-of-manipal-hospitals-on-our-biological-fitness

Sun Nov 28 13:00:19 IST 2021

Biological fitness goes far beyond just body weight. For instance, when someone is overweight, losing just 5 to 7 per cent of body weight can bring several benefits—metabolism moves into the normal range, blood sugar level comes down, there is reduced dependence on medicines, cholesterol drops, blood pressure is normalised and thyroid fluctuation is in control. So if we have a 100-kilo man whose ideal weight is 60 kilos, losing just 10 per cent of his weight might not make much difference to his appearance or physical fitness, but, biologically and metabolically, there will be tremendous benefit. One need not go to the same extremes to achieve biological fitness as one does to get a certain physique.

Biological metabolism has to do with ensuring that the respiratory and cardiac parameters are in place, and breathing is normal. For instance, normal blood pressure is 125 and pulse is about 72. Maintaining a non-extreme exercise regime and a balanced diet goes a long way in establishing biological fitness. There is no shortcut. You cannot achieve it by drastic and sudden changes to your daily routine.

The parameters for gauging biological fitness are fairly simple: an adult must be able to walk at a speed of 5 to 7kmph. If you can do that, you do not have to go overboard with exercise. Biological or metabolic fitness means being able to do everyday activities without any stress. There is no need for excess muscle building using weights or high-protein diets.

A person might have abdominal obesity, but it might not hamper his day-to-day living. Having said that, it could also be damaging his biological fitness and he might not even know until it is too late. Ideally, adults must get around five hours a week of moderate exercise or two-and-a-half hours of more intense activity or a combination of the two. Going over that will not drastically increase one's health benefits. To give the most basic example, I would say that light to moderate runners have a lower risk of death (from fitness-related issues) than people who are sedentary, but those who run at an extreme pace many times a week have an increased risk compared with those who do not run at all. This is because an extreme endurance workout puts demands on the body's cardiovascular system. Too much intensity can undo some of the benefits gained from being active. After a round of workout, assess how you feel physically and emotionally, and you will know if you have been pushing it too hard.

The writer is consultant endocrinologist, Manipal Hospitals, Bengaluru

heres-why-experts-warn-against-going-overboard-with-exercising

Sun Nov 28 13:00:49 IST 2021

In barely two months, India lost two very popular and celebrated actors—Puneeth Rajkumar from the Kannada film industry and Sidharth Shukla from the Hindi film industry and a Big Boss winner. Both were in their 40s, gym regulars and advocates of fitness. Yet, both died a sudden cardiac death; they died before they could be admitted to hospital. Neither of them suffered from pre-existing conditions. A similar death was that of Raj Kaushal, Bollywood director and husband of actor Mandira Bedi. Kaushal was 49 when he suffered a “sudden heart attack”. He, too, was known for his “active lifestyle”.

Each of them had complained of “chest pain” a few hours after their workout, and that has led to several questions. Did the workout have anything to do with it? Did the body undergo exertion caused by 'over-exercising', which then led to a heart attack? How can someone in the prime of one’s life and a fitness buff die of heart attack, which was hitherto mostly seen in the older population and those leading sedentary lifestyles? Medical experts and scientists all agree that exercise in itself cannot be blamed for tragic clinical outcomes, and that it is mainly the “yearning for pushing the body undesirably to test its limits often as an outcome of social pressure” that is at the crux of the problem.

According to Dr Vivek Jawali, chief of cardiothoracic vascular sciences, Fortis Hospitals, one thing that could have happened in Rajkumar’s case was that hardcore exercising could have ruptured his arteries. “For instance, if you have soft to moderate plaques in your arteries, then exercising very hard can lead to spiking of the heart rate, contractile force and blood pressure, which, in turn, can lead to friction of the fast-flowing blood on the arteries and rip them open,” he says. He, however, adds that in Puneeth’s case the heart attack did not come as a major surprise as he had a family history of heart disease. “His brother Raghavendra had come to us at 23 because of a heart attack. His father, Dr Rajkumar, was treated by us for many years for the same problem.”

This June, Danish footballer Christian Eriksen suffered a cardiac arrest and collapsed on field during Denmark's opening Euro 2020 match. The footballer got a miniature defibrillator fitted to detect and correct heart rhythm disorders.

A cardiac arrest, say experts, occurs when the heart stops completely, rendering the person unconscious. A heart attack, on the other hand, is a condition that slows down blood circulation, and the patient may stay conscious.

“We have always had young patients coming to us due to heart attacks caused during and after physical exercises, and a lot of them have been extremely fit also,” says Dr Sudhir Pillai, consultant cardiologist, Hinduja Hospital. He explains that physical fitness may not always be the same as “biological fitness”. The body, he says, does not care about physical fitness, it is about how healthy you are metabolically. He cites three important reasons for young patients to get sudden cardiac arrest—one, owing to a heart attack when the arteries shut down; two, because of arrhythmia when the heart becomes very fast due to underlying heart disorder; three, arterial dissection, where because of the sheer physical or emotional stress, including sudden heavy exercises, the walls of the artery pop.

The moment we cross the age of 20-25 years, says Pillai, we all have these small cholesterol deposits or plaques in our arteries, which may build up over time. Plaque rupture can happen because of extreme physical stress that one is otherwise not conditioned to, or owing to extreme emotional stress and biological stress such as acute infections.

“It takes long years for fitness to be established,” says Pillai. “It is one that begins in childhood and goes on into adulthood. It is worth noting that these kinds of sudden cardiac deaths are not observed much in rural areas or in the labour class or farmers or tribals who have all been doing physical work for years.” For people who take up physical exercise in their 30s and 40s, Pillai’s advice is to give the body time to adapt. “One cannot suddenly start running marathons in short timelines by giving in to peer pressure,” he says. “That can lead to the plaque rupturing and sudden cardiac arrest. Also, those who may be into exercises and fitness for long, but decide to stretch their limits further, for instance, suddenly moving from 20km daily to 40km on a single day will sense trouble at some point. Sheer exhaustion can create either a plaque rupture or dissection of the artery. So please take it slow.”

Mahesh Ambekar, a fitness trainer who runs a gym in Mumbai, narrates the tragic death of a 40-year-old owing to sudden cardiac arrest while working out in his gym. “He was a regular and was on top of his game,” he recalls. “On that particular day, he overdid it with weights and cardio. In his thrill for testing the limits of his body, he took up deadlifts that were close to 100kg, something he had never attempted before. I think that did it. It was just all of a sudden and we had no time to act.”

‘Ego-lifting’, says Ambekar, is the cause of most injuries and even death inside the gym. “One of my clients was doing leg press, which helps in building the quadriceps and hamstrings of the thigh and buttocks,” he says. “He was a gym regular and knew his regimen well. Yet, he went overboard with the weights. While he ideally had to take 180-200kg, he took 350-400kg weights simply as a way of massaging his own ego and ended up with a broken shinbone, which carries the majority of the body's weight.”

Experts agree that extreme exercise can be toxic to the heart. As per a 2018 research report titled, 'Characteristics and prognosis of exercise-related sudden cardiac arrest', published in Frontiers in Cardiovascular Medicine, while physical activity is an established protective factor for coronary heart disease, stroke and heart failure, and may also reduce the risk of sudden cardiac death in the general population, “those who suffer sudden cardiac arrest in association with physical activity tend to be younger and previously healthier”. As per the report, cycling and heavy physical labour were the most common types of physical activity related to sudden cardiac arrest. Reports have also emerged that say putting in excessive running miles, such as ultra marathons, may lead to conditions that may promote cardiac rhythm disturbances.

Over-exercising effects go beyond the heart. Dr R.H. Chauhan, orthopaedic surgeon at Bhatia Hospital in Mumbai, says that he regularly gets patients with knee pains, backaches and muscle tears, either because they go overboard on the treadmill or lift excess weight or indulge in too much strength training in the gym too soon.

Gym trainer and fitness enthusiast Snehal Thevan, who has been training at a gym in Mumbai's Kurla for over seven years now, cites the example of a “fitness freak who overdid it with squats” The man, in his early 40s, did squats with dumbbells weighing over 90kg. “He should have stuck to 40-50kg,” she says. “But because he went overboard, he got a slip disc when he tried getting back up.”

Over-exercising or going overboard with workouts can mean different things to different people, says Chauhan. For somebody who has never exercised in his or her life, overdoing it can mean suddenly indulging in excess workout just for the kick of it. “The legs and the hands stop growing between the ages of 14 and 16 years and the spine stops growing at the age of 22,” says Chauhan. “So that is why any kind of weight-lifting exercise before the age of 18 is not recommended because it can affect one's growth. The most decisive indicator of overdoing it in a gym is the repetition level of a workout. How many times do you do the same exercise over and over again? And, is it too much too early? If the answer to that is a yes, then you are sure to experience muscle fatigue, muscle spasm and muscle tear, and laxity, looseness and injury to the ligaments.”

Chauhan recounts the case of a man who started working out in his early 30s. “He began with 40 reps of every exercise in the gym, right from strength training to weights to squats, instead of taking it slow with 10 reps at the start,” he says. “That alone became the reason for soreness in his muscles and it had a major impact on his knees.”

Also, while lifting very heavy weights, one can injure the body. “You can sprain any joint during weightlifting, starting from the ankle, lower spine, middle spine, upper spine and elbows,” says Chauhan. “A spinal vertebral fracture, resulting from excess weightlifting, is a high possibility, too.” He cites the example of his friend, also an orthopaedic surgeon, who recently fractured his spine and was bedridden for three days because of overdoing the bent-over-rows exercise.

Another example of overdoing it among teenagers is going on a 12km hike with friends all of a sudden with no previous workout routine. Treadmill-related knee injuries that cause wear and tear of joints are the most common gym injuries, and long-term treadmill use in the wrong fashion can even increase the risk of arthritis, says Chauhan. Most of his patients are in the age group of 20 to 40 years who cannot wait to lose weight and build up their muscles and stamina. They want to see the results in a matter of days and that is exactly when things begin to go wrong, he says.

So, just how much exercise is too much exercise? We cannot tell for sure, just yet. “There is no pre-defined limit because the science around over-exercising is simply not enough,” says Dr Aashish Contractor, director of rehabilitation and sports medicine at the Reliance Foundation Hospital, Mumbai. “We have not conclusively proven that too much exercise is bad and what the cutoff point is.”

Aanchal Gupta, who runs the Arts in Motion studio in Mumbai that focuses on freestyle exercises, says that exercise, even if strenuous, will offer more benefits than risks and only a small minority of those who may be having underlying problems might experience arrhythmia.

Agrees Pillai: “There is no doubt that pushing one's body to its maximum every day can stress the heart and raise the risk for arterial fibrillation, a type of abnormal heart rhythm that can lead to heart failure or stroke. But it is important to know that not exercising at all is far worse for the heart than overdoing it, because not getting the blood pumping can lead to clogged arteries and so moderation is key.” The Centers for Disease Control and Prevention recommends that adults get at least 150 minutes of moderate exercise per week to help ward off unhealthy weight gain and heart disease.

Jawali notes that heart attack cases among Indians below 50 years doubled in the last 20 years, and such cases increased by 25 per cent among those under 40. A similar trend is noticed among urban women, too. “The problem is a mixed bag of genetic predisposition toward heart attack, which is almost three times more among southeast Asians than among whites and blacks,” says Jawali. “This has been compounded by a dramatic change in lifestyle.”

While in the US, a number of athletes and fitness enthusiasts die of sudden cardiac deaths resulting from heart attacks because of irregularity of heart rate, young Indians are dying because of accumulated plaque in their arteries and not irregular heart rhythms, explain doctors. These small plaque lesions collected over time due to sedentary lifestyles will become blocked by the time one is 60, say doctors.

“It is not the exercise that is getting people into trouble,” says Pillai, “it is the manner in which the body is put to test during exercise which is the problem. One has to understand the limits of one's own body and follow a structured form of exercise and watch for signs of over-exercise. The most common way of finding it is [to check if your] heart rate is high and [if you] are not able to eat well [in the morning]. Take a break. For instance, after six weeks of good running, take one week off.”

Another problem that Thevan has observed is fitness enthusiasts overdoing one particular workout. For instance, somebody who enjoys treadmill spends more than an hour on it while neglecting the other elements of the body. “This type of overtraining presents itself as knee pain, soreness in the legs and also a sort of exhaustion,” she says. The solution lies in diversifying one's workout routine, she adds.

the-science-of-human-endurance

Sun Oct 31 11:38:37 IST 2021

Endurance is the ability to sustain an activity for an extended period. A muscle’s ability to resist fatigue and sustain the contraction is measured in terms of the number of repetitions. Muscle endurance and strength together constitute muscular fitness. Improving muscle fitness makes difficult activities easier and decreases the risk of injury.

Endurance training programmes can produce small but measurable gains in muscular strength. Activities that require muscle endurance include sustained walking, running, cycling, resistance training, swimming, circuit training, aerobics, dance and rope jumping. In endurance training, the number of repetitions and the length of the muscle or group of muscles are more important than the resistance/load or intensity/speed at which the physical activity is performed.

Endurance athletes desire to maintain an optimal lean muscle that will complement and not hinder performance. Protein contributes only 1 to 6 per cent to total energy costs during endurance exercises, so it is not the main dietary focus. The primary sources of energy are fat and carbohydrates. The main goal of endurance training is to increase the anaerobic threshold as this improves training efficiency.

Improving performance

The three factors that affect endurance are:

1. The maximum capacity of a person to use oxygen during the exercise (VO2 max)

2. Running economy

3. Lactate (or anaerobic) threshold

VO2 max

Improving this can help the heart work more effectively, allowing more intense workouts and improving performance in events. It will also help the person call upon a wider range of speeds. VO2 max is largely genetically determined. Research has shown that whatever aerobic capacity an individual possesses can be improved with training by only about 25 per cent. Oxygen uptake in females is usually 65 to 75 per cent of those of males. VO2 max also declines with age.

Altitude training causes an increase in the haemoglobin content in the blood. So the altitude-trained people, when competing at sea level, seem to have enhanced aerobic performance.

Running economy

This is a physiological measure of the amount of oxygen required to run at a specific pace. The more economical the runner, the less oxygen will be needed to run at that pace. Improving running economy leads to lowered perceived effort at your current race pace, increased endurance at the current race pace, and the ability to run faster than the current competitive speed. Resistance work enhances economy by eliminating wasted energy in excessive movement and by stabilising the running motion. Interval running, when done correctly, trains muscles to use oxygen more efficiently when working hard.

The lactate threshold

This is the running speed at which large amounts of lactate begins to build up in the blood. Higher lactate levels cause pain in the muscles, which causes an athlete to reduce the level of exertion or slow down pace. An elevated lactate threshold helps the athlete run faster with less discomfort. It is a good indicator of performance in endurance events. The accumulation of lactate usually occurs at just below 10kmph pace. One should always stimulate a degree of lactate buildup to familiarise the muscles with lactate clearance capabilities. When training, it is important to take at least one week in four very easy, so as to allow the muscles to recover. Tempo running involves running a specified distance (four to six miles) at a pace just below the threshold. It is ideal for building endurance and generating lactate buildup.

Ultra-endurance sports

Ultra-endurance competition is defined as events that take six hours or more. These events rely on long-term preparation, sufficient nutrition, accommodation of environmental stressors, and psychological toughness. Successful ultra-endurance performance is characterised by sustaining a higher absolute speed for a given distance than other competitors. This can be achieved through a periodised training plan and by following key principles of training. Periodisation is an organisation of training into large, medium and small training blocks referred to as macro-, meso-, and micro-cycles. When the sequencing of training is correctly applied, athletes can achieve a high state of competition readiness and avoid the overtraining syndrome during the months of hard training. A plan is executed in accordance with the following principles of training—overall development, overload, specificity, individualisation, consistent activity and structural tolerance. The training relies heavily on the athlete’s tolerance to repetitive strain.

Today’s ultra-endurance athlete must also follow appropriate nutritional practices to recover and prepare for daily training and remain injury-free and healthy. Ultra-endurance events require energy contributions from all three macronutrients (carbohydrates, protein and fat) as indicated by the duration of the event and the lower intensity.

The successful execution of an ultra-endurance event is dependent on preparation, and attention is given to nutritional requirements, injury prevention, tissue regeneration, and avoidance of acute tissue trauma and overtraining. The training required for ultra-endurance events is no different from that required for other sports, in terms of the underlying principles. The holistic approach can be expanded into five areas that, when combined, culminate in an integrated view of performance—physiology, biomechanics, psychology, tactics and health/lifestyle.

The fundamental variables of physiologic stress are the intensity, duration and frequency of training. Within the training process, the correct balance of low-, medium-, and high-intensity movement is critical to the adaptation process. If too much moderate- or high-intensity training is undertaken, there is a significant risk of fatigue, leading to overreaching or overtraining. Training frequency refers to the number of training sessions within a given time frame, such as a day or a week. Training volume refers to the product of duration and frequency of training (usually in a week), and training load refers to the product of all three fundamental components—frequency, duration and intensity.

Carbohydrate diets range from 5 to 7g/kg/d (gram/body weight in kilogram/day) to 7 to 10g/kg/d three to four days before the competition. The higher the intensity, the more reliance there is on carbohydrates. During prolonged running events, 40 to 80 g/h usage has been reported, whereas usage of more than 90 g/h is not uncommon during cycling events. Most endurance athletes report better performances and minor gastrointestinal discomfort using liquid carbohydrates. Research has shown that fluid ingestion of 30 to 70g of carbohydrates per hour can maintain blood glucose oxidation and delay fatigue. A 7.5 to 12 per cent solution has been shown to minimise the chances of hypoglycaemia and maximise performance.

The modern ultra-endurance athlete requires sustenance to recover and prepare for upcoming training and racing. Rehydration and recovery of fluid balance after exercise, together with the timing and method of increased food intake to cope with heavy training, are essential for optimal performance.

—The writer is consultant, orthopaedics, Fortis Hospitals, Bannerghatta Road, Bengaluru.