Many people with FSHD do not see a neuromuscular doctor regularly. Told that there is no treatment, they wonder, “What’s the point?” In this video, Jeffrey Statland MD explains why a yearly visit is important.
First, the doctor can check to make sure symptoms have not gotten significantly worse since the last visit. With a slowly progressive condition like FSHD, weakness can sneak up and lead to bigger problems down the road. For example, an individual may try to adapt to increased muscle weakness in ways that can lead to muscle strain and injury, and a timely intervention with exercises or braces could help prevent that. Weakness in breathing muscles can lead to a build-up of carbon dioxide in the bloodstream and cause poor sleep and fatigue.
Second, a yearly visit to the doctor gives the individual a chance to learn about advances in research, or opportunities to volunteer for clinical studies. Or one could meet with a multidisciplinary team to get evaluated for physical therapy, orthotics, etc.
Of course the value of the yearly visit depends on being able to find a knowledgeable and sympathetic doctor. Many people feel it’s worth the time and expense to travel to a leading FSHD clinical center. Others are fortunate enough to find a suitable doctor close to home. FSHD specialists are still a rare breed, so if you find a doctor you like, please share that information with us. If you need to locate a doctor, please contact us and we’ll do our best to connect you with one.