City runs 8 km to treat faulty gene

CHENNAI: At 5 am, on Sunday, before the city could wake up, approximately 1,700 people in red tshirts and sports shoes, were all set for a marathon at Guindy College of Engineering. ‘Halo Wings’, an eight-kilometre run from the college grounds, through Kotturpuram, Saidapet, and back, was a commemoration of Rare Disease Day (Feb 28). It was organised by NCC Navy, Guindy College of Engineering — Anna University, along with Lysosomal Storage Disorders Society (LSDSS) to spread awareness and build support for those with lysosomal storage disorders. NCC cadets, students of Anna University, persons with LSD and their families, and doctors in the city participated in the run.

Dr AT Arasar Seeralar, director, Indian Institute of Child Health and Hospital for children, participated in the event and brought broader issues of treatment and supportive care to light. He said, “The condition of the persons with these disorders are severe and chronic. While treatment is available for some disorders like MPS (type I, II, III, IV, VI), gaucher, pompe, and fabry, there are many others that we don’t know of.” The few treatable diseases are very expensive, and not all persons with LSD find sponsors in the state. “The enzyme therapy that patients require can cost from `1 to `5 lakh per session, and so far only CSRs have been supportive with funds.

It was clinically diagnosed until last year, and only now companies like Genzyme, and government hospitals are intervening. But it’s still at a nascent stage in terms of policy and budget allocation. So there’s an urgent need to build awareness,” said Dr K Pramila, professor of biochemistry, Indian Institute of Child Health and Hospital for Children.

The run was organised by students of the college. Raja R from the organising team said, “When so many people participate we know that they are sensitive about the issue, and it’s simply great to see them run in the morning. The best part about this year? A 11-year-old girl came first by completing the run in just 40 minutes.” The marathon is organised every year by Guindy College of Engineering, to raise awareness about lesser-known health conditions. This year, tickets were priced at `150 for students, and `300 for others. All proceeds will go towards the treatment of patients at Lysosomal Storage Disorders Society.

What is lysosomal storage disorder?

Lysosomal storage diseases are a group of about 50 rare inherited metabolic disorders that result from defects in lysosomal function. Lysosomes are sacs of enzymes within cells that digest large molecules and pass the fragments on to other parts of the cell for recycling. This process requires several critical enzymes. If one of these enzymes is defective, because of a mutation, the large molecules accumulate within the cell, eventually killing it.