Facioscapulohumeral muscular dystrophy or FSHD is a highly complex, progressive muscle wasting disease. It does not discriminate, affecting the lives of men, women and children from all walks of life. The Global footprint of this condition is enormous. Worldwide, FSHD affects the lives of an estimated 1 million people, a figure that does not take into account the effect FSHD has on the friends and family of the person affected.
Despite being considered one of the most common forms of muscular dystrophy in adults and children there are no treatments and no cure.
FSHD is commonly associated with progressive weakening of facial, shoulder and upper arm muscles. However, this explanation does little justice to a disease that can rob people of their ability to walk, talk, smile or even eat. The regression often comes in bursts with sudden deterioration followed by periods of no change.