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'My pencil box always has a syringe': Bitter stories of childhoods with diabetes

"If I am served sweets at functions, I first say no, but if they insist I give it to my parents or my brother," says an 8-year-old with Type 1 diabetes.

Written by : Pheba Mathew, Monalisa Das, Sarayu Srinivasan

"I like eating fruits, idli, dosa, upma. But, if I am served sweets at functions, I first say no, but if they insist I give it to my parents or my brother," says Roshni, who is just eight years old, and has been living with diabetes for slightly more than half of her young life.

A few months after her third birthday Roshni’s parents Kokila and Balaji noticed that she had suddenly started to lose weight rapidly. She shrunk to a mere 9kg from 15kg in a very short span of time. 

She would pass urine every half-an-hour and even bed-wet when she didn't have the strength to walk to the restroom. 

"When we took her to the hospital the first thing the doctor asked us, after looking at the test reports, was whether any of us had a history of diabetes. At first we were confused, and later the doctor broke the news to us that Roshni had diabetes," Balaji recollects the day when he feels a "curse" hit the family. 

Roshni has Type 1 diabetes, one of the two major types of the disease, and which predominantly affects children below 10 years of age. Those afflicted just have to take insulin shots life-long. 

According to the American Diabetes Association, "In type 1 diabetes, the body does not produce insulin. The body breaks down the sugars and starches you eat into a simple sugar called glucose, which it uses for energy. Insulin is a hormone that the body needs to get glucose from the bloodstream into the cells of the body."

The choice of a school was never theirs to make, as Roshni’s condition requires her to take an insulin shot which her mother Kokila has to administer before lunch. So, even though they could afford a better school, they had to settle for one that was close to their house in Chennai.

Roshni is quite matter-of-fact when it comes to her condition. "Whenever I feel a little weak and if my knee starts to pain, I pop a glucose tablet. I carry it along wherever I go," she says. 

Besides a strict diet, her everyday routine involves plenty of physical activities. "I play hide-and-seek, lock-and-key and hopscotch with my friends. I know how to swim and I have two bicycles just for myself," she says. 

Twelve-year-old Daisy form Bengaluru takes a syringe in her pencil box everyday. "My parents pack the syringe for me, I know how to inject myself. I only feel sad when I can't eat friends' birthday cakes," she says.

Her father Antony, a car driver, says the condition has taken a toll on their finances. "I can't afford to go to her everyday in the afternoon and administer the shots, nor can my wife. My daughter does it herself. It is tough for us, we spend a lot of money on medicines," he says.

Doctors for quite some time now have been pointing out to the alarming increase in diabetes in children in India. Dr Mohan, a Chennai- based Diabetologist who heads Dr Mohan's Diabetes Specialities Centre, says the rise could be due to two reasons. 

"Firstly, there could be an actual increase in the incidence of childhood diabetes. Secondly, improved awareness about diabetes has led to earlier detection of the disease. In the past, it is possible that many children died without even knowing that they had diabetes," Dr Mohan told The News Minute over email. 

Chennai-based business owner Prithvi (name changed on request) says he tell his eight-year-old son Gagan, who has Type 1 diabetes, that he must try and be like his grandmother who also has diabetes.

"We used her as a role-model for him, to tell him that he must follow her daily diet. So far he has not questioned us about why he needs to take an injection when the whole family does not, but when he does we are confident that he would be in a position to understand," Prithvi says.

Homemaker Shanthi, who lives in Chennai, has worries of a different nature. Her son Vishanth (15) was diagnosed with Type 2 diabetes two years ago and Shanthi too has diabetes. 

Type 2 is mostly seen in adults.

The American Diabetes Association describes the condition thus: "If you have type 2 diabetes your body does not use insulin properly. This is called insulin resistance. At first, your pancreas makes extra insulin to make up for it. But, over time it isn't able to keep up and can't make enough insulin to keep your blood glucose at normal levels."

With Type 2 diabetes, Dr Mohan says, there is usually a strong hereditary factor combined with obesity which causes these children to get diabetes. Stress, physical inactivity and bad diet such as eating of junk foods, is a contributing factor among children who develop the disease.

"Vishanth needs to take insulin shots and medicines on a daily basis. He gets tired very easily. He does things slowly and he finds its difficult to wake up early in the morning," says Shanthi. 

Type 2 diabetes in children can be reversed by diet, exercise and weight reduction in the early stages or at least can be controlled with oral medications, says Dr Mohan. 

However, Shanthi says that though Vishanth engages in some form basic physical activity everyday, it is limited by the long hours he spends in school and tuition. 

"His condition worries us a lot. Also, he will go to Class 10 next year and the pressure from studies might increase. It makes us anxious to think if he can handle it all," Shanthi adds.

Psychological effects

Dr Mohan says that children with diabetes, particularly with Type 1 form, go through a lot of physical, mental, emotional or psychological stress, because they have to take insulin injections several times a day for the rest of their lives.  This affects their self esteem, and could cause depression. Children with Type 2 diabetes have the added burden of dealing with obesity.

Stress on the family

While Roshni appears to have adjusted, her parents fear that as a child she may not always be able to hold out against circumstances. 

"Eventually we stopped engaging closely with people, especially because they brand us as strict parents when we stop them from giving Roshni anything sweet," says Roshni’s mother Kokila. Roshni is only given sweets on rare occasions, like on her birthday or once in six months. “They confuse it with Type 2 diabetes and think it is not that big a deal if she had just one sweet.”

"In some ways we are depriving our son of things that generally children of his age enjoy, but as parents it is our responsibility to strike a balance. Unlike Roshni, we are relatively lenient with him but we try not to make it very obvious," Balaji says.

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