Tag: congenital muscular dystrophy

I love being disabled and I sometimes hate my disease

I love being disabled and I sometimes hate my disease

Being disabled is something I often celebrate. But here’s something I don’t say a lot: I really hate some of things muscular dystrophy does to me. Muscle cramps suck. Getting exhausted after moving 3 things off your desk is unendingly frustrating. Feeling like something should…

5 ways to support a loved one with a rare disease

5 ways to support a loved one with a rare disease

Today is Rare Disease Day, which was created to raise awareness for rare diseases and the people who live with them. I was diagnosed with Congenital Muscular Dystrophy when I was a baby, which is a rare neuromuscular disease. If you want to learn more…