Facioscapulohumeral muscular dystrophy (FSHD) is thought to affect more than 500,000 people worldwide. Although one of the most common forms of muscular dystrophy, its underlying genetic causes have only recently become known.
Medications that show promise in treating other types of muscular dystrophies have not been of benefit in managing FSHD, and no approved therapy exists that can cure or reverse its symptoms. However, there are several options for the medical management of FSHD, that can help improve patients’ quality of life and reduce the risk of related complications.
Regular monitoring of complications
FSHD is associated with breathing problems, foot drop or difficulty lifting the feet, curvature of the lower spine (lordosis) caused by weak abdominal muscles, potential retinal damage in the eye, and hearing loss, particularly in children. Some FSHD patients also develop speech impediments. Patients should be monitored for all of these symptoms, as early intervention may help to minimize the severity of complications associated with the disease.
Currently, no approved pharmaceutical therapies are able to slow, stop, or reverse the progressive muscle atrophy associated with FSHD. Nonsteroidal anti-inflammatory (NSAID) drugs can help reduce inflammation, which may reduce pain and increase mobility in patients.
Scapular winging, or shoulder blade protrusion, is a common symptom of FSHD. Some patients may undergo a surgical procedure that fixes the shoulder blades to the back of the rib cage, which might provide more shoulder and arm stability. This procedure also often reduces the potential range of motion of the arms, but it may improve how well the arms work by providing a point of leverage.
Physical therapists and physicians may recommend orthotic devices to help patients maintain mobility and endurance. Many devices can also help prevent patients from overusing surrounding muscles, which are often used excessively to compensate for muscles weakened by the disease.
Back supports, corsets, girdles, or special bras for women can compensate for weakened back muscles. Additionally, lower-leg braces and high-top shoes are often used to offset atrophied muscles in the feet and lower legs, which can cause patients to trip over their feet when walking. Some patients may find it necessary to use a wheelchair for trips of a longer distances because of fatigue, or because of problems with foot drop. Some also lose the ability to walk.
Exercise and physical therapy
There are few studies that directly assess the effects of exercise on FSHD. Generally, exercise helps maintain muscle strength and is thought to be beneficial for muscular dystrophy patients; however, there is a risk of overusing muscles, particularly the muscles around the shoulder for FSHD patients, which can cause further damage. Exercise programs should be undertaken in consultation with a specialist.
Physical therapists recommend that balance, posture, and strength be evaluated regularly to ensure that a prescribed exercise regimen, which may include stretching, and resistance and aerobic training, is of benefit. Low-impact aerobic exercises, such as biking, walking, and swimming, are typically less stressful on muscle fibers while still providing a way for patients to maintain overall fitness. Those who experience muscle cramps, pain, or extreme fatigue during a workout should contact a physical therapist to adjust their exercise plan.
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