Patient stories

Read and listen to stories from people who live with different neuromuscular conditions. They follow the path from their initial reactions after diagnosis, to adapting their lives, and moving forward with new dreams and ambitions.

Tatum, 25 years old

I have a rare progressive disease called Limb-Girdle Muscular Dystrophy, type 2B (LGMD2B)

Andrew, 38 years old

have Type 2A LGMD. I use a wheelchair and enjoy taking my son on adventures around the UK.

Victoria, 27 years old

I am half Middle Eastern and Asian. I love languages and technology. I also like socialising with others and the diversity they bring, being mixed myself.

Doug, 70 years old

I was diagnosed with CMT type 2. I spend a lot of my time raising awareness of all the rare diseases out there.

Donna. 45 years old

In 2015, I was diagnosed with Myotonic Dystrophy, Type 1


I like photography and have Muscular Dystrophy amongst a few other conditions.


25 years. I have a type of Muscular Dystrophy, called Charcot-Marie-Tooth Disease. I’m also partially blind in my right eye, and have Thoracic Kyphosis Scoliosis.


I have Muscular Dystrophy and use a powered wheelchair. I have gone back to university to retrain to be a psychotherapist for people with chronic health conditions.

Pooja’s story

19 years. I have Spinal Muscular Atrophy type 2. I was diagnosed when I was 18 months old.


21 years. I suffer with Myotonic Dystrophy DM1. I am a person who loves filmmaking.


23 years. I am a person who loves Formula 1 and videogames.


21, I live with Becker Muscular Dystrophy. I was diagnosed when I was ten years old; and I love travelling and flying.