Government should be empathetic in its approach towards us

Victims of muscular dystrophy out on wheelchairs to create awareness

Devanshi Joshi. Vadodara/DNA
Monday, December 08, 2008


Sanjana and Atul Goel, the sister and brother duo, have been suffering from muscular dystrophy - a genetic disease characterised by progressive weakness and degeneration of the skeletal muscles which control movement. Though the illness has made the two physically unfit, their spirits are still touching the skies. Nothing could prevent their nationwide mission that they have undertaken on wheelchairs for spreading awareness about muscular dystrophy.As part of their nationwide tour, undertaken at the behest of Indian Association of Muscular Dystrophy, Sanjana and Atul were in Vadodara recently. As a part of their awareness campaign, the wheelchair travellers visited Disha, a city based NGO that runs a school for such patients and Autism Centre.Muscular dystrophy is a critical illness that occurs generally among children. With the passage of time, the victims of the disease lose various functions. First, walking is affected, later they find difficulty in rising from sitting posture. Soon they are forced to take to wheelchairs. Though their brain functions normally, the muscles slowly keep deteriorating, and soon their independent existence turns into a nightmare. “There are about four lakh patients of this disability. Unfortunately, most of them do not confess and undergo treatment because of the fear of not getting a suitable match. In fact, with DNA tests and pre-natal tests, muscular dystrophy can be detected and treated. I know a quite a few disabled mothers who have given births to normal children,” Sanjna told DNA.There are various types of dystrophies and the inheritance pattern varies with each type. “The genetically inherent disease of muscular dystrophy affects children, and women are carriers of the disease. All the voluntary muscles of the body are more or less affected in the dystrophic process. The muscles involved in chewing food are the least affected while respiratory muscles are involved late in the disease. Tow to three cases of this disease come to me every month. The experiments on stem cell and other researches are still in test tube,” says Dr Bhavin Upadhyay, a city-based neuron physician.These two enthusiasts have been travelling on their wheelchairs all over the country to create awareness about the silent killer. “If the developed countries make life so easy for people on wheelchairs, why cant the Indian government do the same?” Atul asked. The duo appealed the government and the citizens to be empathetic; and not sympathetic, towards the people suffering from the disease.