A 15-year-old city girl who suffers from type 1 diabetes has posted a petition addressed to Prime Minister Narendra Modi on Change.org demanding that her condition be declared a disability. While sugar levels of children diagnosed with type 1 diabetes need to be constantly monitored, the autoimmune condition literally robs them of the joys of childhood.
“Include type 1 diabetes as a disability. We might look normal but we are not,” reads Adya Satapathy’s online petition, which is backed by a group of NGOs and Novo Nordisk Education Foundation.
Type 1 diabetes is a chronic condition where the pancreas produces little or no insulin. While there is no cure to the condition, the treatment is about managing blood sugar level with insulin, right diet and a healthy lifestyle to prevent patients from slipping into coma.
Describing the ordeal faced by children like her, Adya said they can’t be on empty stomach even for a few hours for fear of suffering a hypoglycemic (low blood sugar) attack and fainting. They can even slip into coma if not revived by passersby or bystanders who may not know why a child has collapsed. “What do we do?” she asked.
Adya said the need of the hour is a comprehensive medical policy that will give type 1 diabetes the disability tag.
“We encouraged our daughter to be open about her condition. Some children hide it from their school staff because of stigma. There is lack of awareness in India about type 1 diabetes. Schools have to educate and train their staff in assisting and managing children with type 1 diabetes, a life threatening disorder,” said Adya’s mother Asha.
Adya’s parents recently encouraged her to go on a school trip to the Nilgiris, instilled confidence in her and taught her lifesaving skills.
Allow use of insulin pump in exam hall
“These children need constant care and cannot be left on their own, particularly if they are less than five years old. There is always the risk of these kids losing consciousness owing to low blood sugar levels. The brain needs a constant level of glucose for normal functioning. Until they are old enough to manage themselves, type 1 diabetic children need constant monitoring – administer insulin at the right time, eat right amount of food, exercise adequately and not indulge in excess physical activity without appropriate food intake. This is where support from schools matters,” said Dr P Raghupathy, professor of paediatric endocrinology at Indira Gandhi Institute of Child Health.
“All that schools need to do is to provide a congenial environment for these children. It could be about letting them have a snack before taking them out for physical education training or ensuring them free access to toilet,” said Dr Kavitha Bhat, paediatric endocrinologist at Rainbow Hospital. School must have trained staff to prevent a child with Type 1 diabetes from slipping into coma.
Dr Bhat said that children having type 1 diabetes must be allowed to use insulin pumps in exam halls where no gadgets are allowed. Insulin pump is a small electronic device attached to the abdomen of the user. It mimics the functioning of pancreas and replaces the injections by supplying the precise dose of rapid acting insulin whenever its level drops.
“These kids have to often tell examiners and authorities on why they need insulin pump, adding to their stress,” she said.