Over the next few weeks, we’ll be sharing “LGMD2A/R1 Stories” so you can learn more about the C3 Community as we raise money together to drive scientific research toward a cure for this muscle-wasting disease. Today, meet Noni and María:
Hello, I am Noni. My sister María and I have LGMD 2A/R1. I was diagnosed when I was 12 years old, my older sister when she was 25. We are now 58 and 65. We were fortunate to have had good family support and do normal things like going to college, working, traveling and getting married.
I stopped being able to walk at age 33 and my sister at 59. We both use a scooter full time. Our arms have also been getting progressively weaker; we can’t drive any longer and need help with most activities of daily living. A recent femur fracture has made life much worse for my sister. We hope researchers will soon find a cure or treatment. It may not come soon enough to help us, but we hope it can help younger people with LGMD avoid the hardships this disease can bring.