Social stigma haunts Bangladeshi children afflicted by diabetes: Doctors

Mohammad Tajul Islam started believing that he had only four to five more years to live when he was diagnosed with diabetes 10 years ago at the age of 15. It is Type-1 diabetes which meant he had to take insulin all his life.

“It felt like what I would do with my life,” Tajul Islam, who is doing his masters at Dhaka University now, said, recalling those days of stigma and rejection on Wednesday at a World Diabetes Day event in Dhaka.

“Some were saying that you’ll be impotent. You’ll die in four or five years. Friends were looking at me differently.

"I stopped going out of home. Suddenly, I found my life within the four walls of home…not taking insulin regularly. It took two years for me to adjust to the situation around me,” he said at Birdem-2 Hospital.

Mohammad Tajul Islam (Right)

Diabetes in adults as a lifestyle disease is well-known in Bangladesh. Doctors say major problems of childhood diabetes is stigma related to the condition and monthly costs for insulin which is around Tk 8,000 at a minimum.

Bangladesh does not have national registry of diabetes patients, but international estimates suggest around 17,000 children have Type-1 diabetes in the country.

“The exact cause is unknown, so we don’t have prevention and treatment. They cannot produce insulin at all so they have to depend on taking insulin all their life which is costly and painful," Dr Bedowra Zabeen, child diabetes specialist at the Changing Diabetes in Children Programme that organised Wednesday’s event, said.

"They become unconscious (when blood sugar level falls) and face breathing problems. Eyes and kidney diseases are very common,” she added.

The diabetes association has over 5,000 registered children who take services from them.

“Social stigma is a big problem. From schools to society, they face neglect, tease and taunts,” Dr Zabeen said.

“We have children who faced in their schools questions like ‘how did you get it?’, ‘You must be taking sweets too much, ‘It’s infectious'."

“So they tried to hide their condition. They cannot take insulin when they need. This is very risky,” she said, adding that those children need to take insulin in lunch time when they usually stay in schools.

“But schools do not have a separate place for them to take that. Some children said when they take insulin, teachers think they are taking drugs. Friends do not want to hang out with them. They even go to toilet to take insulin,” Dr Zabeen said.

“Family disharmony is also common, though it’s not genetic. It can happen to the children even if any of the parents does not have diabetes. Sometimes parents hide the condition of their daughter and marry them off before the age of 18. Ultimately, those girls face divorce when their in-laws come to know about that.

“We have instances in which the bride keeps insulin hidden under the bed, though you have to keep insulin at a certain temperature to get maximum benefit,” she said.

“The whole family suffers,” she said, citing a mother, who has a 14-month child detected with diabetes, “‘I cannot shut my eyes at night for thinking about my baby. I set the alarm in the fear of hypo or hypoglycaemia’ – a condition when the level of sugar (glucose) in your blood drops too low and requires immediate insulin”.

“But the management is not easy. It’s multidisciplinary. We have to have a team consisting of doctors, health educators and psychologists. The treatment is unaffordable for many,” she said, urging Health Minister Mohammed Nasim who was present at the programme to take steps.

The minister reciprocated immediately and said he would look into the scopes of reducing taxes on insulin or products related to insulin injection through the Ministry of Finance.

But insulin should be free for children, said Prof AK Azad Khan, President of the Diabetic Association of Bangladesh.

“Children should get insulin free. It’s their right. They are not responsible for the condition they face. For them insulin is life. Insulin is a human rights issue for them. Society must be prepared to provide them with free insulin,” he said at the discussion.

Unicef health officer Dr Margub Aref Jahangir seconded him and said Bangladesh as a signatory to the UN child rights convention must do that.

“It’s their right to get insulin. Children should not be deprived of insulin. It’s their birth right to get whatever necessary to survive,” he said, adding that Unicef is ready to help the government in raising awareness about the childhood diabetes.

Tajul Islam said he is also running a campaign and working to change the mindset of society. “We have a group who have taken an oath to take insulin publicly to remove the stigma. We are doing that. When people see that, they think we are taking drugs. Then we tell them about the Type-1 diabetes and insulin, they believe us.”

“Life is a little difficult with diabetes, but it’s not impossible” – was the caption of an illustration, done by a child with diabetes, which was presented at the event.