Facioscapulohumeral muscular dystrophy - Muscular Dystrophy Queensland

Facioscapulohumeral muscular dystrophy (FSH or FSHD)

FSH symptoms include progressive weakness of facial, shoulder, and upper arm muscles. The degree to which each of these areas are affected differs from person to person. It is also very common for the muscles that lift the foot when walking to be affected, resulting in foot drop.

The condition is equally likely to appear in girls and boys. Although present at birth, commonly symptoms don’t begin to affect mobility until adolescence and adulthood. 

The name Facioscapulohumeral comes from facies, scapula, and scapula, Latin words and the anatomical terms for face, shoulder blade and upper arm.

Facioscapulohumeral muscular dystrophy


Most people with FSH experience an asymmetry of weakness on the left and right sides of the body. A weakening of shoulder and upper arm muscles can cause the shoulder blades to “wing” out and make it difficult for a person to raise their arms above their head.  

Weakened muscles around the hips, legs and feet can also make walking and moving between sitting and standing positions more difficult. People with FSH may benefit from the use of walking aids. Manual and then power wheelchairs can also assist as the condition progresses. 

In the facial muscles, weakness can make it difficult to do everyday things like smile and sip from a straw. People can also have difficulty closing their eyes due to poor control of the muscles around the eyes, particularly when sleeping. This can result in dry eyes and other issues with the eyes.

Although less common, FSH can manifest in childhood or infancy. These children commonly experience a comparatively faster, more severe decline in muscle function. Hearing and vision complications can also occur. 

FSH is divided into two types, Type 1 and Type 2, based on the affected gene and inheritance pattern. Symptoms of both Types are so similar it is not possible to distinguish which Type is present without a genetic diagnosis.  

There are two types of FSH, Type 1 and 2 which refers to the affected gene and inheritance pattern. It is not possible to differentiate between the two types based on symptoms alone.

We are here to support you

Medical Alert Cards

Medical Alert Cards

Muscular Dystrophy Queensland has created condition-specific alert cards for the most diagnosed muscle-wasting conditions.

These cards mean that people living with muscle wasting conditions and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.

Order our Medical Alert Card for Facioscapulohumeral muscular dystrophy today

Community Members

Become a Community Member

By becoming a registered Community Member of Muscular Dystrophy Queensland you will be able to gain access to relevant supports.

At Muscular Dystrophy Queensland we don’t see you as just a client. You are a valued member of our community. We’re here to support you through every stage of life. We’d like to keep in touch with you, to understand your needs as they evolve and provide you with ongoing access to our range of services. And so, we ask you to register with us. 

Useful Resources