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Actor Karthi with children at an event organised by the Lysosomal Storage Disorders Support Society in Chennai on Saturday —
CHENNAI: Despite having already undergone three surgeries, 15-year-old K. Divya puts on a brave face when asked about her health. Her mother, K. Prabhavathi, is pensive though. “When she was three, her fingers were abnormally bulged. She used to have regular fever, and other health problems. Doctors now say her medicines are still in the phase of trial, and it will cost us about Rs.1.5 lakh a month to cure her,” she says.
Divya has Lysosomal Storage Disorder, a disease that comprises 40 rare metabolic inherited disorders, caused by Lysosomal malfunction. In an event organised here on Saturday by the Lysosomal Storage Disorders Support Society (LSDSS), parents of children with the disorder shared their experiences with media persons. The event also saw actor Karthi, who was the chief guest, being declared the cause ambassador.
Sujatha Jagadeesh, consultant clinical geneticist, Fetal Care Research Foundation said: “Simply put, every cell in the body has a dustbin to discard its waste. In these cases, the dustbin stops functioning leading, to malfunction of vital organs, and even severe damage.” Only six of the different kinds of LSDs caused due to the malfunctioning of a certain enzyme are treatable, she said.
Genetic counselling is necessary, especially if the first child has the disorders, she said. “There is a 25 per cent recurrence of the disorder in the next pregnancy. Screening of the new born to check for this disorder and pre-natal diagnosis would also help.” Gene therapy can bring about a cure, but it is still in the research phase, Dr. Sujatha Jagadeesh added.
As the treatment for these disorders is unaffordable for many families, Prasanna Kumar Shirol, President, LSDSS, urged the government to help them bear the expenditure towards the treatment.
Mr. Karthi underscored the need to spread awareness of the disorder. Recalling his interaction with some of the children, he said: “More corporates should come forward to bear the heavy expenditure incurred in treatment, and also fund research.”
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