Committed to a cause

The Muscular Dystrophy Association India has made significant strides in helping people cope with the ailment. KAUSALYA SANTHANAM writes...

FOR the parents and relatives of those affected by Duchenne Muscular Dystrophy, it is a long and terrible journey marked by anxiety at every stage. To be unable initially to make out why certain movements of your child are impeded. To be told that he suffers from a progressive form of muscular disorder. To watch someone you love deteriorate steadily and feel helpless to arrest it. To witness the gradual loss of mobility. To try desperately to find a cure. And finally to lose the child you adore when he is just in his early twenties. There are many forms of muscular dystrophy of which the Duchenne is the most severe; the others may not be fatal.

Having someone to share the problems, to guide and advise you can make it a little easier to bear the burden and pain. The Muscular Dystrophy Association India (MDA), set up in February 2000 by the Kanchi Kamakoti Childs Trust Hospital (KKCTH), has made significant strides in the last one year. The muscular dystrophy support group which celebrated its first anniversary at the Vani Mahal recently, has succeeded in creating awareness about the disease. It has brought about networking of the parents of those affected by the disease and has been providing orthopaedic aids and wheelchairs to patients who have lost their mobility.

The MDA which consists of parents, patients, doctors and volunteers, has organised meetings, lectures and seminars. "We have a website and are planning to bring out a newsletter," says Dr. V. Viswanathan, pediatric neurologist at the KKCTH, who was responsible for founding the association along with Dr. Kalpana Gowrishankar, Consultant geneticist at the hospital and Dr. G. Kumaresan, Prof. of Paediatric Neurology, Institute of Child Health, Egmore. "Radio programmes are also being produced to create awareness and on March 21, one such programme will be aired on Chennai AIR. The Rotary Club of Madras South has been involved in the efforts since the inception of the MDA with Mr. V. R. Anil Kumar, past president of the Club playing a major role."

On March 3, the MDA India, with the help of the Rotary, organised a programme to raise funds. Before the young performers of Abaswaram Ramjhi's light music group sang their hearts out for the cause, those involved in starting and taking forward the activities of the MDA took stock of what had been done and outlined the plans for the future.

Dr. Viswanathan and Dr. Kalpana would carry out drug trials on groups of patients to evaluate response. Seminars would help update information and research programmes would be initiated. Mr. S. R. Madhu, president, Rotary Club of Madras South, reiterated the club's commitment to the cause. Dr. Viswanathan said the number of children affected by Duchenne Muscular Dystrophy was astronomical in India. The 3H - hunger, humanity and health - Grant which they had hoped to get from the Rotary International for setting up the DNA testing laboratory had run into problems in the U.S. owing to the objections from anti- abortionists.

But the MDA was in touch with the latest developments and he was hopeful a cure would be found soon.

The hope of a medical breakthrough was also underlined by film director Rajiv Menon, the chief guest. He added that interaction and sharing can help one handle the pain and gain strength.

"You also learn to tackle the practical difficulties," according to Poornima, the mother of a dystrophy affected child. "My son is in Class VII. I learnt from the mother of a boy in Class X that the Board of Education gives you half an hour more to complete the public examination. At the meetings, many parents talk about their frustrations but some are very positive too."

Instilling this positive spirit and the courage to fight against odds is what makes every step forward of an association like the MDA India significant and filled with hope.

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