We’re our own best experts, but what if we’re incapacitated?

We’re our own best experts, but what if we’re incapacitated?

I believe that many adults living with rare diseases can and do become experts in their conditions, sometimes more so than healthcare professionals. With respect to my own journey with limb-girdle muscular dystrophy, this point became particularly clear when I had a near-death experience in early 2024. Several types of muscular dystrophy (MD) are rare, including my own form of it. This makes it difficult for me to find healthcare professionals w…