What Is Facioscapulohumeral Muscular Dystrophy?

Facioscapulohumeral muscular dystrophy (FSHD) is a genetic disease where the muscles in the face, shoulder blades, and upper arms become severely weakened over time, although other muscles can also be involved. The symptoms usually start before the age of 20 but facial weakness can begin in childhood. According to the Muscular Dystrophy Associaton, the progression of the disease is very slow and those with the condition have a normal life expectancy.

MORE: Talking to family members about your child’s neuromuscular disorder.

June 20 was World FSHD Day when non-profit organizations and families affected by the disease from around the world came together to raise awareness of the little-known disease using social media and other outlets. Find out more about FSHD Awareness Day. 

It’s thought that around 870,000 people in the world have the condition, with organizations saying that it affects between one in 8,000 to one in 20,000. Due to the nature of the disease and its slow progression, many think the actual number of people who have the disease is much higher but many have not yet been diagnosed.

MORE: Coping with your child’s diagnosis of a neuromuscular disorder.

Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.