.@JPNadda Grant Permission to Continue Stem Cell Therapy to battle FSHD #StrongerThanFSHD

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I, Aditya Bhatia, am a survivor and an advocate in the fight against a terrible disease. I have been waging a war against FSHD Muscular Dystrophy since the year 2012.

Coming up to a decade, my war against this harrowing ailment has now unexpectedly been struck by who I believed to be an ally – the Government. The Health and Family Welfare Ministry of India has now implemented New Drugs and Clinical Trial Rules 2019, which has halted my Stem Cell Therapy, that proved to be aiding me in my fight against FSHD.

Sign this petition asking the Health and Family Welfare Ministry of India to grant me the permission to continue the Stem Cell Therapy to battle FSHD, a rare disease I have.

A genetic muscle disorder that has crippled a lot of my physical abilities and often my mental spirit, Facioscapulohumeral Muscular Dystrophy, better known as FSHD is characterised as a wasting and weakening of shoulder, arms, face, abdomen and leg muscles for millions like me.

This affects everyday activities, even those that we often take for granted like combing one’s hair, brushing one’s teeth, picking up a glass or even using the laptop at work.

Waging a war against FSHD, I have been determined to build my muscles, cultivate them to fight the disease and prevent the complete debilitation of my body. I began the patented Stem Cell Therapy in 2013 through consistent, regular and disciplined sessions.

This therapy did not just prevent further disability but I also regained a large amount of my strength, and have been training rigourously. I have been able to reverse the disease to an extent but it requires continuous efforts until a definite cure can be established. 

Today, as life would have it, the progress that I have made is faced by yet another threat. As the Government creates new standards in the Drugs and Clinical Trial Rules (March, 2019), I face the unfortunate and sudden stoppage of my treatment (since March, 2019). This, for me, is life threatening and nothing short of suicide.

This unfortunate turn of events has affected me and those close to me at a colossal level. At this point in my life, I do have a lot to look forward to. Everyday, the community struck by FSHD sees exciting new trials and technologies being developed to help us reach closer to a cure.

I urge the government and those who do have the power and conscience, to help me live my life to my best ability by granting me permission to continue my treatment as I have a rare disease.

Sign this petition and share it, so that I can fight and those with the power can aid me in my fight by allowing my body to become better with this therapy. #StrongerThanFSHD