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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..

## From the world of business and glamour to that of rare genetic disease: A Mom’s resolute journey as India’s torchbearer of Prader-Willi Syndrome

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

Sudha Bhattacharya

Dec 28, 202526 min read

4,505 views

2 comments

## Spinal Muscular Atrophy : From being denied school admission to reaching the portals of IIT Kanpur

This is the story of how a family dodged the severely debilitating rare disease - Spinal Muscular Atrophy

Sudha Bhattacharya

Feb 26, 202317 min read

1,102 views

1 comment