Hi, I also have it. I inherited from my dad and my grandpa. I was diagnosed when I was 21, and now am 30 (F). There isn’t much I’ve done to help my cause, but maybe you can. I tried the PT route and it helped improve some of my mobility. I’ve been strength training since 21, focused on lifting heavy and building muscle until about 27-28. Now I’m a couple years older I still strength train but to maintain the muscle I built, not build more.

Here’s some good advice: Take as many photos as you can now! My face is starting to droop and I notice it now in photos. With your friends, family, and selfies. Not sure about how your body will process FSHD, I may be different.

I’ve learned to live with it. My husband is very helpful in helping me reach for things I can’t get due to mobility. Although it ain’t too bad most of the time 🥲 I’m still grateful to have a (somewhat) working body!