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.

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..