Sjoerd from IJsselstein takes action for muscle disease of son and himself: ‘Before it is no longer possible’

Sjoerd from IJsselstein takes action for muscle disease of son

What is FSHD muscle disease?

FSHD is short for “facio scapulo humeral muscular dystrophy.” It is a hereditary muscle disease that causes your muscles to lose more and more strength. It usually starts in the face, shoulders, and upper arms. Then it can move on to the abdomen and legs.

In the Netherlands, more than 2000 people have FSHD. Many patients eventually end up in a wheelchair and have to be put on a ventilator at a later stage. It is currently incurable.

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