Today is World FSHD Day. FSHD is a type of muscular dystrophy that I have, and though you never hear of it, it affects a lot of people. It is often misdiagnosed or not diagnosed at all, but causes all skeletal muscles to deteriorate over time. Severe cases have extreme weakness even as an infant. The mildest case may never know they have it until they are retired. Most (like me) fall somewhere in the middle. Now that I understand the disease, I can see that my earliest symptoms began in middle school when performing sit-ups became difficult. Likewise, it became difficult to hold up my right arm in class. In high school, it progressed to affect both my shoulders and my face. In college I was diagnosed and the uncertainty put a great emotional burden. At that time, the diagnosis was given by a physical exam and I always wondered if I had something else. The next 25 years I really noticed no change at all, other than it was easier to pull a muscle and I would get sore from less work. But a few years ago, I noticed weakness in my right ankle, and since then it has gotten steadily worse and I have a limp now. At that point I got a genetic test which confirmed the diagnosis. My "upper half" muscles have weakened and it takes very little to wear me out or give me terrible muscle aches. FSHD currently has no treatments and no cure but there's a lot of research going on. Recently, researchers have finally determined what actually causes the muscle decay, and it is an incredibly complex reaction in the DNA. There are some clinical trials of potential treatments going on and things look brighter, but you can help! Please consider donating to the FSH Society. This is an exciting point in the research where treatments could really be developed. https://www.fshsociety.org/support-us/make-online-donation/ https://www.instagram.com/p/By8BGNTHEDF/?igshid=s2wm8sl9ebeh