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 Daniel:
Hello, My name is Daniel. I have LGMD2A/R1. I was diagnosed at the age of 17 years and I am now 41 years old. I have slowly been losing my physical abilities. I am a Jeweller by trade and have been working in this industry for over 22 years. Due to my declining strength I am unable to walk up stairs. This forced me to start my own jewellery business, with accessibility to my studio/workshop.
This disease takes a lot from you, like standing from a seated position and walking. I have difficulties lifting things. For me this disease has limited my ability to do things independently. You need to have a lot of determination with this condition as it’s also mentally challenging. I am focusing on nutrition to extend my ability to be ambulant as long as possible.
I am passionate about advocating for this community – a cure would change everything. I hope for a cure in the near future so that a young kid doesn’t have to experience these challenges.