Research

The GNE Dialogues

Search

Resetting life after Adult-Onset Myopathy: Acceptance, Endurance, Conquest

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’.

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..

A Dad Takes Under His Wings All ‘Silent Angels’ of Rett Syndrome

## 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.

Writer: Sudha Bhattacharya

Sudha Bhattacharya

May 1, 202419 min read

1,229 views

0 comments

Duchenne Muscular Dystrophy: How a self-taught dad is using state-of-the-art science to save his son

## Duchenne Muscular Dystrophy: How a self-taught dad is using state-of-the-art science to save his son

Ambrish and Nikita Kapadia Physician-scientists are perhaps some of the busiest people on the planet. With heavy clinical duties on top…

Writer: Sudha Bhattacharya

Sudha Bhattacharya

Jun 13, 202322 min read

1,650 views

7 comments