Amy Bekier, facioscapulohumeral muscular dystrophy (FSHD) patient and Board Member of the FSHD Society, advises patients to get involved with FSHD patient advocacy groups.
FSHD is a rare, progressive musculoskeletal disease in which persons initially lose muscle strength in the face, shoulders, arms, and trunk, but later the disease progresses throughout the lower body. FSHD is due to the mis-expression of DUX4 in skeletal muscles. There are currently no approved treatments for the disease.
The FSHD Society is the world’s largest research-focused FSHD patient group. The group’s two main focuses are on accelerating research toward a FSHD treatment and empowering patients. Amy has been a member of the group for over 20 years now and is currently the chair of their governance committee.
To learn more about FSHD and other rare musculoskeletal diseases, visit checkrare.com/diseases/musculoskeletal-diseases/