Treatment Facioscapulohumeral muscular dystrophy (FSHD)

There are no cures for FSHD or specific drug treatments. Regular exercise (especially hydrotherapy) helps to keep people moving and manage pain. It is essential to keep your weight down (through diet if necessary) to reduce stress on already weakened muscles. If you’re exercising to increase muscle strength, build your exercises up gradually.

Can orthoses help?

The use of orthoses (devices that support the feet) can be helpful for people with FHSD. They frequently improve the most common features, such as foot drop and shoulder weakness. After your physiotherapist assesses you, ask to be referred to the Orthotics team. They will guide you which orthoses will help you.

Can surgery help?

The scapular muscles, which attach the shoulder blades to the chest, are often very weak with FSHD and can make lifting the arms difficult. The operation of ‘scapular fixation’(fixing the shoulder blades to the ribs at the back) has enabled some people to regain more use of their arms. Because people with FSHD may not be moving their arms or legs much, this could make these muscles weaker. It is advisable to have a combined assessment from a neurologist and an orthopaedic surgeon first. If the eyes become inflamed because they remain open at night and artificial tears alone don’t help it is possible to have surgery to bring the eyelids closer.

What is the risk of anaesthetics?

There is no known risk, but some patients with FSHD can experience increased sensitivity to sedatives, inhaled anaesthetics and drugs that relax the muscles (neuromuscular blockers). Make sure the anaesthetist is aware of your diagnosis before any operation so they know how to look after you after the operation. This is especially so for people whose lungs don’t work as they should. Local anaesthetics and nitrous oxide are safe, for example in minor dental procedures. It is also helpful to carry an FSHD alert card, and a care plan, both of which contain information to alert emergency and other healthcare professionals of the specific issues that affect you.