FSHD is highly variable and does not follow a standard pattern of weakness, nor does the disease progress in the same way for everyone.
FSHD gets its name because the muscle loss is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles. However, other areas can also be affected, such as the abdominal core, hip girdle, and legs.
Muscle weakness typically develops asymmetrically, affecting only one arm or one leg, for example. This asymmetric weakness may differ between limbs on the same person, or there may be one whole side of the body that appears weaker. Symptoms may appear years before a formal diagnosis by a doctor. For some people, the weakness may have developed so slowly that they were unaware they were experiencing muscle loss.
FSHD does not follow a standard course of progression; every person can experience a slightly different pattern of symptoms. However, there are some common symptoms which are often first noticed, or perhaps the first obvious signs of disability:
Typical symptoms can (but don’t always) include:
The following signs and symptoms are less common but can be associated with FSHD:
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