FSH Muscular Dystrophy 101

[@wjcorrinne4052]

I was diagnosed at age 65, I was lucky in that I led a mostly normal life. Others aren’t as fortunate as me and have a much harder time of it. I’ve often wondered if I’d been diagnosed in my teens, what would my life had been like? I don’t know if I’d have kids? I have two daughters and they show no signs of the disease. I may have FSHD but it doesn’t have me.

[@Tom-uf2um]

Both my older brother and I were diagnosed at 61 and 64. We both injured our right shoulders while playing sports in high school and just assumed it was the way it was. Doctors had no idea how to explain it. Not until I was 61 and working out regularly did the disease rear it’s ugly head, weakening my right arms bicep. As you, we both have lived full lives only now starting to see the disease taking its toll. I work out regularly in the hopes of keeping the unaffected muscles strong. I am so glad your daughters don’t seem to have this and hopefully never will. My nephew (my younger brothers son) appears to have missed the bullet too. My younger brother missed it too. Sorry if this reads poorly, writing was never my friend. Best of luck.

[@dharmarajbhatta3694]

any treatement please

[@alfiejackalfiejack5040]

Can the vagus and phrenic nerves be affected by fshd?

[@MrRastaman457]

I think this video is pretty unsettling right at the end. You dont even mention the various treatments in phase 2 clinical trials for this disease. It is quite unsensitive to make a video like this and make us younger FSHD patients feel like life is hopeless. I know mine isn't.

[@Tom-uf2um]

It was unsettling to me too, even at 65. I hope and pray phase 2 is positive.

[@debbieeggleston3420]

This is the most depressing and negative video. Why is everything from FSHD society so negative? I'll make sure my newly-diagnosed child doesn't read info from the society. It's too bad we can't rely on the society for support.