CHENNAI: When doctors diagnosed six-month-old Daiwik P with diabetes , his parents thought medicines and insulin should be able to help him lead a normal life. But when bouts of fits and vomiting went up after medication, paediatricians ordered further tests.The results showed he had monogenic diabetes — a rare condition resulting from mutations in a single gene passed on by parents and which can be managed without insulin. Unlike in type 1 and type 2 diabetes, where there are multiple gene mutations, this has only one gene variation.“The rogue gene was making his pancreas release too much insulin that would speed up metabolism. As a result he would frequently have dangerously low sugar levels,” said his mother Geetha. The only option was to remove nearly 95% of his pancreas.Now nine, Daiwik has normal blood sugar levels and does not require medication to manage his sugar levels, but the frequent blood level drops when he was less than one-year-old damaged his brain. “He forgets things very fast. I wish we had known about his condition earlier,” Geetha told a hall filled with children with monogenic diabetes and their parents at an event organised by the Madras Diabetes Research Foundation.Tears welled up in the eyes of Saranya R, who lost two children to Wolcott-Rallison syndrome (WRS) — a genetic disease characterized by permanent neonatal diabetes mellitus with multiple stymied growth, weak bone and other clinical manifestations, including recurrent episodes of acute liver failure. “I have been working hard to keep Varun alive for 13 years. I could not help his sisters,” she said.Over the last decade, the number of people diagnosed with monogenic diabetes has increased, say doctors at the Madras Diabetes Foundation. “We realised these patients and their parents need support groups so they can share information and help each other. We are also making recommendations to the government based on policies,” said diabetologist Dr V Mohan. On Saturday, ahead of international day for diabetes (Nov 14), his centre launched Monogenic Diabetes Study Group . The Madras Diabetes Research foundation has also tied up with centres across the country for diagnosis and treatment of children with the condition.“Many poor patients get free treatment. While tests for research purpose are done for free, we raise funds for treatment for some patients,” he said. On Saturday, the research foundation promised medication for twins Yamunashree and Gopikrishna, 9. “Their medicines cost Rs 10,000 a month. They have to take this medicine to keep their sugar level under control. Since they can’t afford the medication, we have decided to give it to them free,” he said.

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