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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.
Where there is a will, there is a ‘Champion’.
Symptoms of rare diseases often creep up quietly, rather than arriving with the brutal shock of a sudden lifestyle upheaval. The change is gradual—unyielding and relentless in its impact. One moment, I was darting around the globe, making things happen with agility and speed; the next, it felt as though someone had chained a 1 kg weight to my ankle..
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
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2 comments
## Turning A Bedroom Into The Safest Home ICU
How two sisters mastered the technology of critical care to help their mother live with ALS. Darji was a profoundly devout man. His piety…
Sep 21, 202437 min read
778 views
9 comments