Nearly 26,000 people in Tamil Nadu have muscular dystrophy, and there is an urgent need to provide comprehensive care to them, said V. Viswanathan, a paediatric neurologist who runs Muscular Dystrophy Association India (MDA), a non-governmental organisation
Muscular dystrophy is a genetic disorder that weakens the muscles that help the body move.
Speaking at the inaugural function of the Model Centre and Welfare Assistance Programme Dr. Viswanathan said, “We hope that with assistance from the State we can set up a comprehensive centre for children and adults who suffer from neuro-muscular disorders. This centre will provide not just medical evaluations, but also physiotherapy, respiratory assessments and appropriate assistive devices, wheelchairs, orthotic aids and appliances as required. We hope to start genetic testing facilities at this centre too so that testing can be offered to every family free of cost. This will also help carrier detection and prenatal diagnosis.”
The lifespan of children with muscular dystrophy has increased now, he said. Earlier, children used to live up to the age of 15 or 16, but now they reach their mid-20s. “Our eventual goal is to set up a National Muscle Research and Rehabilitation Centre in Chennai so that research towards finding a cure for the disorder can proceed here simultaneously with the rest of the world,” Dr. Viswanathan said.
B. Valarmathi, minister for social welfare, who inaugurated the event, said the State has already allocated Rs. 50 lakh towards financial assistance for children with muscular dystrophy.
The minister also flagged off two vans for children with muscular dystrophy who study in a school started by MDA in 2009. “We have added two vans only to help more children get to our school. Right now, we have one bus which is able bring only 10-12 children including the wheelchair-bound ones. We also have another van covering north Chennai. But we want to cover more areas with these two vans,” Dr. Viswanathan said.
