A disease and stigma: Child diabetics fight both ways

It has been years but the incident is still vivid in her memory.

Officials at her college hostel entered the room when she was taking an injection. What was a lifesaver for the girl appeared to be illicit to those officials. They suspected substance abuse and called in the police to hand her over.

But Sadia Jannat was not taking drugs. She was injecting herself with insulin, something type-1 diabetics cannot do without.

The 23-year-old was diagnosed with diabetes when she was only eight. Since then, she has been discriminated against in educational institutions – and even at home.

She, however, fought against all odds to move ahead in life and went on to get a law degree. She is now a practising lawyer. Yet, she continues to face social stigma.

Worse, she is facing trouble getting married due to the disease.

Like Sadia, Tazul Islam Munshi, 27, has also suffered stigma and discrimination. He was diagnosed with type-1 diabetes in 2010 when he was a college student. Relatives would say he would not live long and friends would troll him.

His parents would mostly keep him away from other people. He would also take insulin in secret.

In Bangladesh, diabetes is on the rise among children besides adults. Though society is accustomed to seeing adults being diagnosed with diabetes, awareness of child diabetics has not developed yet. These children have to fight the disease as well as social stigma as they lead their daily lives.

Doctors say children are mostly diagnosed with type-1 diabetes but the exact cause of the disease remains unclear. Insulin is not produced in the bodies of these patients, and so they need to inject themselves with this hormone regularly.

Type-1 diabetes cannot be prevented or cured.

According to experts, social stigma is hindering the development of child diabetics, but they can also lead a good life if they are not stigmatised and can also maintain a healthy lifestyle by taking insulin regularly.

After Sadia Jannat was diagnosed as a diabetic, her teachers thought of it as a contagious disease. No one would sit next to her in the classroom.

She took a one-year break from study due to the inhumane treatment she had received from teachers and friends. But when she resumed study, she continued to face various obstacles until she got into university.

"After I was diagnosed with diabetes as a child, my relatives came to feed me for a last time, thinking I would die soon. As everyone behaved like that, every night I thought I would probably die before morning.

"Life has changed a lot after I finished my studies. Now I think diabetes is not a curse. Instead, it is helping me lead a routined life. But I am having serious trouble tying the knot as men do not want to proceed when they hear that I am a diabetic. Now I feel like the childhood stigma is back and my parents are also worried," Sadia told The Business Standard.

According to the International Diabetes Federation, 17,000 children in Bangladesh are suffering from the disease. Of them, 80% are type-1 patients and 20% are type-2. About 3.4 type-1 cases per 100,000 children and adolescents are diagnosed in the country every year.

But Birdem General Hospital in the capital says it has a list of 7,800 child diabetics aged up to 16. Moreover, 400-500 new child patients are diagnosed every year.

Diabetic Association of Bangladesh President Prof AK Azad Khan said if a child frequently drinks water and urinates or loses weight suddenly in a short period, it is a symptom of diabetes. This can happen any time after a baby turns one, and parents then need to consult a doctor immediately.

"There is nothing to worry about diabetes. The first step in controlling the disease is to change your lifestyle. It is possible to control diabetes and live a healthy and normal life through lifestyle management. For this, we need to build social awareness," he explained.

Tazul Islam Munshi has been receiving treatment under Changing Diabetes in Children programme and Life for a Child programme at Birdem hospital under the supervision of Dr Bedowra Zabeen since 2012.

"I lived in constant fear after I was diagnosed with the disease. I was always worried about whether someone would find out that I had diabetes. When I would go out, I would enter a bathroom to take insulin. My mother was worried and would cry all the time," he said.

After receiving counselling during treatment, he got the courage to survive. He overcame many obstacles in life. Having obtained a master's degree in English from the University of Dhaka, he is now working as an auditor at the defence finance department.

He also passed the 40th civil service written test and is now waiting to face the viva voce. Moreover, he is working in the Young Leader in Diabetes programme of the International Diabetes Federation. He offers child diabetes counselling.

Tazul said people think both type-1 and type-2 diabetes are the same as they are not well-informed about the disease.

"Type-2 diabetes damages various organs, including kidneys and heart, but type-1 is different. Type-1 diabetics can inject themselves with insulin. When they do this, they are artificially taking the hormone that is not produced in their bodies naturally.

"They can just live normally like others. But the society does not realise that. They kill a child patient's spirit to live in the name of consoling them," he added.

His physician Dr Bedowra, a paediatrician and paediatric endocrinologist, described insulin as a human right for type-1 diabetics.

She said the government wanted to distribute free insulin on the occasion of Mujib Borsho, and the initiative should be implemented fast.

Speaking about the lack of diabetes awareness in educational institutions, she said schools do not treat child diabetics humanly, and there is no scope for children to take insulin in school as per health guidelines.

"In the interest of children, teachers and other employees should be made aware of child diabetes so that children suffering from the disease can get a favourable environment in school. Through publicity campaigns, society should also be made aware that children with diabetes have the right to live a healthy life and establish themselves," added Dr Bedowra.