The following essay was written by Zabrisa, a 16 year old FSHD patient who lives in Arizona. “Are you strong enough? Are you really sure you can do this, you’re not too weak?” “You’re such an inspiration for chasing your dreams.” “Smile, Zabrisa!” “You look so weird.” “Your ears–what are those things in your ears?”… Read More »
Carlos Romero, an FSH Society member, was featured today on Good Morning America in connection with People magazine’s annual “Half their Size” issue, which is out on news stands today. While the magazine focuses on several individuals’ remarkable success in overcoming obesity, Carlos made a point of highlighting the role his FSHD diagnosis played in his personal transformation. You… Read More »
“Muscular dystrophy is something I might have,” Levinson said. “But it doesn’t define who I am.” Ryan Levinson, of San Diego California, was diagnosed with Fascioscapulohumeral muscular dystrophy (FSHD) in 1996. Though he suffers from muscle loss typical of most people with FSHD, and can no longer hold up his arms, do a sit up,… Read More »
Our latest publication from FSH Society’s Living with FSHD Series is now available! For details HERE. To read the “FSHD: A Guide for Schools” on-line PDF
Best practice guidelines on genetic diagnostics of FSHD are now available and published in the journal Neuromuscular Disorders! FSH Society sponsors workshop held June 9, 2010, in Leiden, The Netherlands.