A Mother and Daughter in India With Muscular Dystrophy Have Started A Hunger Strike To Demand Treatment and Support

According to a story from aninews.in, mother Shashi Mishra and her daughter Anamika Mishra have staged a hunger strike in a desperate move to receive treatment for their muscular dystrophy. At the medical center where they reside, their basic needs are being taken care of, but their condition has not been treated and is steadily worsening.
Muscular dystrophy is a condition in which the muscles progressively weaken and break down over time. There are multiple variants of muscular dystrophy the differ in when symptoms first appear, how rapidly muscle breakdown occurs, which muscles are affected, and the severity of muscle weakness. Most people with muscular dystrophy eventually lose the ability to walk. Symptoms include poor balance, deformation of calf muscles, abnormal, waddling gait, and breathing problems. All of these progressively worsen over time. Life expectancy can be significantly affected depending on the severity, with some people not surviving into adulthood; failure of the breathing muscles is a common cause of death. To learn more about muscular dystrophy, click here.

In India, treatment for muscular dystrophy is available, but it can be very costly, and it is far too expensive for Shashi and Anamika. Since 2014, the patients have written multiple letters to the Chief Justice of India, the Prime Minister, and the President. Their demands are a testament to the extent of their suffering: the patients have asked for either financial assistance to help cover their treatment, or for permission to be receive euthanasia. Anamika and Shashi have lost much of their ability to move. Recently, the Indian Supreme Court recently approved the legality of passive euthanasia, which is simply halting treatment that is keeping a terminally ill patient from dying.

The predicament is indicative of the severe challenges that many people with rare diseases across the world can can face. While many rare disease patients in the developed world face immense obstacles in seeking treatment and getting a timely diagnosis, in less developed countries, most people with rare diseases go undiagnosed and untreated. As a result, they are subjected to miserable existences and early deaths. Tragically, for Shashi and Anamika, death is apparently an option they are willing to consider if they cannot change their situation soon.

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