Sunday, 28 June 2009

Muscular Dystrophy: The need to fight this crippling disease

By Syed Akbar
Hyderabad: Nipun Loya was bubbling with energy and vigour till a few years ago. Today at 14, Nipun cannot stand, write or even wipe out the sweat from his face. And he could barely utter a few words.
Nipun is one of the 50 and odd muscular dystrophy patients who have gathered in the city from different parts of the country to dissolve their sorrow in a unique fun camp. Nipun no longer feels he is alone in suffering. He has found quite a few new friends from places as far away as Solan in Himachal Pradesh.
"Muscular Dystrophy patients do not generally move out of their homes. Most of them are caged in their living rooms for months together. An outing once in a while makes a big difference to them. The present fun-cum-picnic camp is programmed on the lines of "Jerry Kids" camps being held regularly by Hollywood comedian Jerry Lewis for MD patients", says Vipul Goel, himself a victim of the crippling genetic ailment. Vipul's brother Atul and sister Sanjana are also MD patients. Muscular Dystrophy is a common disease affecting mostly children progressively distroying their muscular system. Patients generally die before they attain the age of 25.
The city's fun camp is incidentally the first outdoor programme for MD patients in south India. With 52 patients in attendance, it is also the second biggest fun camp in the country after the Solan's camp held last year in which 92 patients participated. Points out Sanjana, president of Indian Association of Muscular Dystrophy, "no where in the world not even in the USA more than three dozen MD patients turn up for such programmes. Indeed it is an achievement".
The child patients participated in several fun events including infotainment competitions like word building, Antakshari, throw ball and lucky names. According to Sanjana and Vipul, chess player Venkatesh, who died from MD after his euthanasia plea was rejected by government, had inspired them to hold fun camps all over India. "We have made a beginning in Hyderabad and it will continue every year", they said.
Unmindful of what the cruel fate has in store for them, young MD patients spent time in sharing their dreams. "I want to be doctor", says 14-year-old G Srikrishna, who is good at sciences and social but not so good at mathematics. Srikrishna is now studying in 9th class and goes to school in his father's car.
Like Nipun, O Rahul and K Bharadwaja have stopped studying. "It is quite difficult to physically lift the child and put him in the classroom. He cannot maintain personal hygiene and so we have stopped sending him to school", says Nipun's father Narayan Loya. "He eats only one chapathi in the morning and one in the evening. He does not feel hungry. He even cannot change sides on the bed. We have to attend to his every need", he says.
The grown-up patients, however, want to spend the rest of their life in happiness. "We do not want to die early. We want to live and enjoy life to its fullest. We are against mercy killing. Why should one ask for it. Why the desperation" argues Vipul. Our picnic programmes are with a purpose and we want to bridge the gap between normal and disabled people, he adds.
According to Dr R Janardhan Rao, the association has an enrolment of about 3000 patients all over the country. Though the exact number of MD patients in the country is not known, it is believed that there are at least 3.5 lakh people affected by the disease.

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