Time to tackle type-1 diabetes

Deeksha (name changed), 9, awes everyone with her impressive gymnastic moves. But, she never gets to participate in inter-school competitions. Reason: she has type-1 diabetes mellitus, a condition in which the body produces little or no insulin.

Because of this, “The school management feels that she might go low during competitions, troubling the team,” said Deeksha’s mother.

The cause of this health condition is still unknown. This commonly occurs in children.

Since Deeksha was diagnosed with type-1 diabetes two years ago, her parents have realised that an inclusive atmosphere is hard to achieve, be it in school or in society.

Every morning, Smriti (name changed), 11, wakes up to the realisation that she has to inject insulin pens four to five times a day. Though it was difficult to accept the situation initially, she soon learned it. “My parents can’t be with me 24X7. I have to manage the situation on my own,” she said

However, she ensures her cousins and friends don’t know about her condition as she fears they will start treating her differently.

Seven-year-old Rithvik’s parents were not aware of this condition until their son was diagnosed with it four years ago. “The hospital staff too panicked when the test results were out and didn’t know how to handle the situation,” Rithik’s father Amitabh recounted.

The family rose to the occasion and started creating awareness about this neglected noncommunicable disease. “We don’t hesitate to discuss the condition. It is rare, so we need to spread the word,” Amitabh said.

Feelings of anxiety, confusion, relief and hope swayed as over a hundred kids and their parents narrated their tales at the launch of ‘Type-1 Diabetes Foundation of India’ in Bengaluru recently.

The pan-India forum is the culmination of the efforts of people with type-1 diabetes who have come together from across the country as support groups.

“There is still a stigma linked to type-1 diabetes like many other noncommunicable diseases. The first reaction is ‘How did it happen to you’, the second one is ‘getting her married will be difficult’. It took years for my family to accept the situation despite the fact that my parents were doctors themselves,” says Apoorva Gomber, 29.

Apoorva, who was diagnosed with the condition at 16, works relentlessly to empower people with type-1 diabetes.

Initially, she used social media to vent out and eventually, it became a tool to bring about change.

“If educated people don’t step out, people from the marginalised communities will never speak out,” she said.

Over 20 such support groups across the country act as advocacy platforms and connect with people with a similar condition.

Karnataka has two such forums — DIYA and Samathavam. From creating awareness to attending SOS situations and supporting economically weaker sections financially, they go all out.

Support system

Doctors play a crucial role in treating type-1 diabetes. “However, there are certain situations when you need expert advice. Even at midnight, you post a question and get an answer within seconds. This sense of community goes a long way in boosting our morale. Many times, advice from people who are dealing with the condition for decades is more relevant,” said Amitabh.

These groups have members aged from five to 50 years.

Words such as type-1 person, type-1 parent and type-1 family are used to instil confidence in them.

“The first question a parent would ask is if there is a cure. We should convince and counsel them to accept the situation. While there is no cure as yet, one can lead a near-normal life with proper care,” said Apoorva, who is also a doctor. This Young Leader in Diabetes at the International Diabetes Federation works with other youngsters to empower people with type-1 diabetes.

Dr Vijay Ajgaonkar, the founder of Juvenile Diabetes Foundation, Mumbai, said that there is considerable progress in monitoring, treating and managing the condition. “However, there is no breakthrough in finding a cure,” he said.

International Diabetes Federation estimates that there are nearly one lakh people under the age of 14 years with type-1 diabetes in India.

While there is no official data available, statistics collated by the support groups show that Karnataka has the second highest number (10,000) of children with type-1 diabetes in the country.

The support groups are also working towards creating awareness. “This will help in addressing the challenge of the delay or lack of diagnosis,” Naveen Kottige, a founding member of the forum, said. Naveen has been managing the condition for three decades now.

The cost of care

Insulin pen or pump is used to control the disease. The medication costs anywhere between Rs 3,000 and Rs 10,000 per month.

Though the government provides conventional insulin at government hospitals, analog pens are more suited for type-1 diabetes, experts say.

Low-income groups struggle to access insulin. The forums are supporting them, who otherwise are forced to compromise on giving insulin to their children, resulting in health complications. Naveen says that the government should take proactive steps and frame a policy to support people with type-1 diabetes, particularly those from low-income groups.

Following an effort in Delhi, Karanataka’s support groups intend to educate students about the condition, its management, and how peers and teachers can show support.

The forum is also planning to bring out reading material about the condition in regional languages as part of its awareness programmes.