Seven-year-old Mohammed Althaf knows he has to take four injections and a few more pricks every day, for the rest of his life. He is in upper KG, in Sulthan Bathery, Wayanad, and his father, who runs a men’s salon near his school, visits him twice a day to give the injections. Althaf has Type 1 diabetes mellitus (T1DM), as the doctors call it, informally referred to as type 1. It’s a chronic, auto-immune disease characterised by no insulin production. Type 1 diabetes can set in at any age, but it most commonly sets in after 2-3 years of age, but is sometimes detected at 13-14 years. Out of 100 people with diabetes, five of them would be Type 1 diabetes. Out of 100 people with Type 1 diabetes, 95 of them would have had its onset in childhood. Only 5 of them would have late onset. Late onset can be at any age--30 to 50, even at 80.
Family circle
Althaf is one among approximately 97,700 children under 18, living with type 1, according to estimates in the Indian Journal of Endocrinology and Metabolism . Last week, the recently-formed Kerala Type 1 Diabetes Welfare Society came together to recognise that it was a growing problem. “The numbers could be much more than that,” says Abdul Jaleel, one of the founding members and Althaf’s father.
Beginning as a WhatsApp group of parents of children with Type 1, the Society today has over 300 members from all over Kerala. Apart from acting as a support group, the parents help those who are unable to meet the expenses required in diagnosis and treatment. They organise events to create awareness on the disease and its treatment. The group has appointed co-ordinators in each district and its ultimate aim is to set up training centres that equip parents to manage the disease. They are open to adding people from other places as well, and guiding them to finding help in their cities, or to form a similar support group there.
“India accounts for most of the children with T1DM in South-East Asia,” says an article giving overall insights on the disease. It also says there is a 3-5% increase every year. But because of low awareness, parents may miss it.
Catch it early
“Type 1 diabetes should not be confused with other types of diabetes; it is a totally different disease with devastating complications. These children need special care,” says Dr Jothydev Kesavadev, a diabetologist and Chairman and Managing Director of Jothydev’s Diabetes Research Centre in Thiruvananthapuram. The Kesavadev Trust, which he helms, has been working for the welfare of children with Type 1 diabetes for over 20 years now, and he is the medical advisor for the Kerala Type 1 Diabetes Welfare Society.
He feels there is a need to educate people about Type 1, as in most cases, it goes undiagnosed. Dr Inderpal Singh Kochar, a paediatric endocrinologist at Apollo Hospital, Delhi, says the number of toddlers who are being diagnosed with Type 1 diabetes has gone up. “It is not preventable. Children who have it are genetically predisposed.”
Treat it right
Once diagnosed, it is still not easy. “Type 1 patients are always on a roller-coaster ride. They are prone to constant fluctuations in sugar levels that can lead to diabetic ketoacidosis (a complication resulting in high sugar levels) or hypoglycaemic coma (very low sugar levels). The only way to deal with it is to educate the parent or the caretaker on treatment modalities,” he says.
Treatment currently involves four or more insulin injections a day. Before each injection, the blood sugar level must be tested, so that easily means more than a dozen pricks per day. While the injections are given on the arms, thighs and around the navel, the pricks for testing blood sugar are given on the finger tips, which are often painful. “Imagine an eight-month-old child, or a two-year-old, for instance, having to go through this. It is more painful for the parents,” says Shana CD, one of the co-ordinators of the welfare society and a mother of a three-year-old with Type 1.
The condition can be extremely traumatic for the parents and children, says Dr Kochar. “Hospitals should have psychologists to counsel the parents and children to help them understand that they are capable of leading normal lives. Parents should not blame each other. A diabetes nurse should be in regular touch with the parents to help them through the treatment and for emotional support,” he says.
The equipment required for treatment is expensive. The glucometer, (an apparatus for checking blood sugar levels) and insulin pen, along with recurring expenses, may be difficult for an average family to handle. There is advanced equipment available, such as continuous glucose sensors, which do away with painful pricks needed in the case of glucometers and insulin pumps that replace insulin injections by automatically sensing sugar levels and administering the required amount of insulin.
Dr Kesavadev hopes to see at least ordinary insulin pumps in Government hospitals, along with a team of doctors and paramedical staff who are properly trained in caring for children with Type 1. At present, the medical community and society make do with conducting camps for teachers on Type 1 diabetes to create awareness and remove stigma. “The ultimate aim is to help these children have longer, more meaningful lives,” he says.
When to take your child to the doctor
Sudden bed-wetting
Weight loss, even if the child is eating well
Increasing thirst
Vaginal infections in girls
Frequent tiredness
