Muscular Dystrophy - An NGO's Crusade to Help the Society

Muscular dystrophy (MD) is a group of almost thirty genetic disorders that causes progressive degeneration of our voluntary (or skeletal) muscles causing their weakness. Duchenne Muscular Dystrophy is the most common form of muscular dystrophy that is caused by a recessive sex-linked gene located on the X chromosome and carried only by females. It usually affects boys and gradually as they grow there is weakness of the muscles restricting their movements and eventually affects the muscles involving breathing. It may affect the heart and lung functions too. There is no cure for Muscular Dystrophy but there is ongoing research worldwide to understand the condition better, prevent it and treat the inherited disorder so that the quality of life can be improved for those affected by the different variants of Muscular Dystrophy. It is estimated that every year there are over 1600 children born with this condition in India.

Medindia spoke to Dr. V. Vishwanathan, DCH, MRCP, Ph. D (Pediatric Neurology) Consultant Pediatric Neurologist and Founder President, Muscular Dystrophy Association India, a project that has crossed cultures and borders in research and facilities for improving the quality of life for children affected by Muscular Dystrophy.

The NGO that he founded raises the level of public awareness on Muscular Dystrophy. MDAI has been instrumental in starting for the first time in India, a school exclusively for kids affected with MD. MDAI is one of the centers listed and recognized by the Cooperative International Neuromuscular Research Group (CINRG) — the global program on Duchenne Muscular Dystrophy.

Q. What motivated you to begin the Muscular Dystrophy Association India in Chennai in 2000? 

For quite some years I was involved with a lot of children affected by Muscular Dystrophy and their families during my several research projects in India and abroad. When my good friend Dr. Gunter Schuebraundt visited India, he suggested we begin an association that would serve as a platform for researchers, doctors, patients and their families and members of the community in general, to come together and lend a helping hand to sufferers, especially children. What started in a small way on Feb 5^th 2000 is now serving the needs of Muscular dystrophy patients in a big way, thanks to the collaborative effort of many enthusiastic and generous supporters of MDAI. 

Q. How does MDAI improve the lives of children challenged by Muscular dystrophy and their families?

I would say MDAI is a facilitator for improving the medical treatment and quality of life for children affected by Muscular dystrophy. MDAI has a team of doctors, physiotherapists, philanthropists and volunteers who explore ways and means of reducing the suffering of MD patients and implement them. MDAI provides assistance to families who cannot afford the investigation for a clear diagnosis and gives free custom made wheel chairs and orthopedic appliances to affected children. We offer psychological support for patients and families, counseling them on how to deal with the challenge of coping with the disorder. MDAI advises parents on the need for physiotherapy, provides the same in needy cases and arranges fund raisers, outdoor visits and entertainment shows for patients and their families. 

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In addition MDAI coordinates in organizing conferences and meetings for parents and health professionals to facilitate better understanding and treatment of the disorder, raise public awareness on Muscular dystrophy and sensitize people to lend support to patients at home, in schools, places of employment, and other public places.

Q. Recently MDAI’s efforts made it possible for India’s first school exclusively for children with Muscular Dystrophy to come up in Chennai. Tell us how it happened? 

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We’ve seen parents of children with Muscular Dystrophy struggling to send their ‘special’ children to a normal school. We decided to approach the Chennai Corporation commissioner with a request to start a school for children with Muscular Dystrophy. It was a shot in the dark with many people telling us it may not happen at all. We tried anyway and we were able to convince the civic authorities and the state government to begin a school that would cater to children with Muscular Dystrophy. The school was opened recently by the Deputy Chief Minister of Tamilnadu, Mr. M.K. Stalin and a new bus to pick up and drop children at home is scheduled to arrive within the next 10 days. 

Q. What would you consider as Muscular Dystrophy Association India’s big achievement? 

It warms my heart to see people rising above petty differences such as caste, creed and gender in their desire to reach out to kids suffering from Muscular Dystrophy. Recently a child with MD required a pap ventilator for survival and the parents could not afford the facility. Another parent whose child died of the same disorder arranged for a pap ventilator costing over a lakh rupees to ease the child’s suffering. Similarly we’ve seen a Muslim religious Trust pay for the medical expenses of a young Hindu child who suffered from Muscular Dystrophy and needed IV infusion costing Rs. 66, 000.

What started as a small initiative ten years ago is now the hub for doctors, patients and families and civic bodies to improve the quality of life for patients with Muscular Dystrophy. MDAI has been instrumental in creating in Chennai, a lab for muscle diagnostics, a muscle bank and is actively associated with international research bodies working to find a cure for Muscular Dystrophy.

"Happiness is contagious. By giving we receive." 

Dr. V. Vishwanathan, the driving force behind Muscular Dystrophy Association India clearly belongs to the cadre of health experts who go beyond the call of duty and put a smile on faces of patients and their families. Medindia wishes MDAI all success in its endeavor to facilitate better medical treatment and thereby improve the quality of lives of children afflicted by Muscular Dystrophy. 

Source-Medindia
Thilaka Ravi/L