Shout out to Charley who approached us with the idea to create the LGMD2A/R1 Patient Story posts: “Sharing different patient stories can highlight how this condition affects people at all ages and stages of progression. I think this kind of content could help raise awareness beyond the science, like showing the human side of your research, encouraging people to connect to your page, and helping others with LGMD2A feel less alone 💚” We couldn’t agree more, Charley!
Hi, I’m Charley and I have LGMD2A/R1 (Calpainopathy). I was diagnosed when I was 14, I’m now 21 and over the years I’ve gradually had to adapt to muscle wasting. I rely on a stairlift at home, use a cane some days, and a wheelchair for longer days or busier environments.
Calpainopathy is a progressive form of Limb-Girdle Muscular Dystrophy, meaning it primarily affects the muscles around the hips and shoulders. For me, that means everyday tasks like climbing stairs, getting up from a chair, or standing for long periods can be challenging.
I still enjoy being active. I did a bungee jump fundraiser in 2023 and participated in an inclusive 5K with my gym – J7 Community Health Centre.