Facioscapulohumeral muscular dystrophy or FSHD is the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. The major symptom of FSHD is the gradual weakening and loss of skeletal muscles. The usual location of these weaknesses give the disease its name: face (facio), shoulder girdle (scapulo), and upper arms (humeral). People affected by FSHD lose the ability to smile or make facial expressions, which can lead to social isolation. From one year to the next, teenaged athletes may find themselves suddenly unable to throw a ball or run. Patients live in constant fear of falling and of becoming dependent on others for simple tasks like bathing, brushing teeth and feeding themselves. As the disease advances, the spine folds into an S-shape from lack of muscular support. Patients become confined to a wheelchair and may develop respiratory failure.
While there is no known cure for this disease, I, along with many others, are doing what we can to bring awareness to muscular dystrophy and raise as many research dollars we can.