Two of our members, Diane and Lexi Pappas, were featured in Muscular Dystrophy News, sharing their struggles about living with FSHD. Diane is Lexi’s mother and the two live in Massachusetts. Lexi shares both the difficulty she had about opening up about her disease and the sense of liberation she has gained from raising awareness: “It’s actually really freeing, knowing that all these people know about my disability. It means I don’t have to hide it anymore. The more awareness I can spread, the more research we can get for the FSH Society.”
Diane says this condition has made the two of them closer through their shared experience: “My daughter has actually inspired me to be more open about our disease and she is definitely braver than I ever was growing up.” Both Diane and Lexi talk about attending the FSH Society’s patient conference last November and the challenges of living with FSHD. For the whole story, read here.