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Resetting life after Adult-Onset Myopathy: Acceptance, Endurance, Conquest
Welcome to my new series of blogs about stories of rare diseases that manifest later in life.
Here I present the stories of three other strong-willed GNE Myopathy women coming from different socio-economic backgrounds and different life trajectories in their pre-disease era.
Ansh and his mother Shikha Shikha’s family migrated from Rajasthan to Kolkata several generations ago and set up a flourishing textile business. She had always seen a life of plenty, although tempered with discipline and hard work. She was gifted with great physique, charming looks, and a sharp mind, all of which floored young Vikram whom she met while still in high school. After graduation, Shikha landed a job in a garment export company. She handled the competitive Europea
Dec 28, 202526 min read
4,505 views
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## A Dad Takes Under His Wings All ‘Silent Angels’ of Rett Syndrome
Arising from the Doom of ‘No Diagnosis No Treatment’, here is the story of how Samir Sethi persevered.
May 1, 202419 min read
1,229 views
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Duchenne Muscular Dystrophy: How a self-taught dad is using state-of-the-art science to save his son
Physician-scientists are perhaps some of the busiest people on the planet. With heavy clinical duties on top of running a successful research program that involves keeping track of latest developments in their field, hiring and training research staff, planning and executing the research, and competing for research grants, these busy-bodies haven’t a moment to spare. So, if some of the top…