22 September 2009
By Nandita Sengupta
New Delhi, India
Last month when Jeet Narain, a marginal farmer from UP’s Mirzapur district, filed a ‘Mercy death’ plea for his four sons aged between 10 and 16, all suffering from muscular dystrophy (MD), little did he realise the shockwaves it would send among similar patients, struggling against odds to live a life of hope.
Families fighting the debilitating condition empathize with the farmer’s economic and emotional plight but wholeheartedly reject end–of–life as solution to their suffering. “I want to tell families with MD that the situation is not so bad that we should kill our children,” says Sanjana Goyal, who runs a boutique in Solan. Goyal and her two brothers suffer from MD. Adds Hoshiarpur’s Seema Rani, 31, “This news (the mercy killing plea) will force parents, especially the poor ones, to wonder about their misfortune. It will affect children’s confidence to fight. Many children may feel guilty and will also think of mercy pleas.” Seema is undergoing neurotherapy for MD, and says the poor need access to therapies which are not costly and aren’t painful either. “With therapy, at least you won’t become dependent, you will be able to take care of your basic needs,” she says.
Muscular dystrophy (MD) is a group of over 30 genetic conditions where skeletal muscles that control movement degenerate progressively. While some variants don’t appear till middle age or later, Duchenne MD, which afflicts Narain’s children, is the most vicious. It affects boys by the time they’re five, damaging the lower limbs first, progressively moving upward. Rapid degeneration follows and a child can be confined to a wheelchair by age 12. Once MD affects the diaphragm, the patient’s respiration is compromised, followed by cardiac arrest.
The trauma is same for all families, which find no support for their affected children. “The plea is a wake–up call to the government,” says Swatenter Bansal, who lost his 18–year–old son to MD five years ago. “In 1983, when my son was first affected, very few doctors knew about it. The government accords absolutely no support to MD patients. There’s little research, no data.”
A despairing Bansal left no stone unturned to help his son. “Overseas, governments ensure physiotherapists attend to MD patients and make sure the expensive equipment is available.” Later, Bansal set up a website, Muscular Dystrophy India, and uploaded information on the condition. When affected families get in touch he sends them newsletters, articles and magazines collected from UK, Australia, US and New Zealand associations with guidance and advice on ways to help MD patients. Lack of any support system prompted the Goyals to start the Indian Association of Muscular Dystrophy. They counsel, organize seminars and coax families to speak up about the disease. It’s not easy. They have to literally hunt down families with MD. “Patients often don’t come out. When families realize it’s incurable, the child is thrown into a ‘Dungeon’ because no one knows any better,” says Sanjana. In villages, doctors often give muscle tonics for ‘Weakness’, not realizing a child has MD, she says.
Estimates suggest MD affects one in 3,500 but Sanjana doubts it. “We will have a workshop in Bhuj, and 12 have already registered,” she says. At the policy level, MD is a blind spot. Peculiarly, it is clubbed into the Disabilities Act. But MD is degenerative, not a physical handicap, says Sanjana. What is required is help by way of trained physiotherapists and early diagnosis of deformities.
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