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6. What can someone with FSHD Expect as they age?
In some forms of muscular dystrophy the course of the disease over time is uniform for everyone with that particular disease. The same cannot be said for FSHD. The course is extremely variable from person to person even within the same family. In general, over a lifetime, it is expected that about 20% of individuals with FSHD above the age of 50 will require the use of a wheelchair. The remaining 80% will have variable levels of disability ranging from very mild weakness to severe weakness.
It is difficult to project the course of the disease for any one person because of the unpredictable nature of the condition. In general, however, the earlier in life symptoms start, the more severe the disease is likely to be. Consequently, patients with FSHD1 who have very large deletions are predicted to have a more severe course. One other factor that affects disease severity is gender. Women with FSHD, as a group, tend to be more mildly affected and they are typically older when they start having symptoms of FSHD.
For more information, please contact the Fields Center FieldsCenter@urmc.rochester.edu