“My son has fibrous dysplasia in his left leg. What should we do to treat it?”
My 15 year old has been recently diagnosed with fibrous dysplasia in his left leg and we aren't sure where we should start with treatment. Our doctor has only suggested that we should closely monitor it with routine X-rays. But I heard that there's medication that can help?
2 Answers
Unfortunately, there are no known cures for fibrous dysplasia, it is a self limiting disease. Fibrous scaring occurs in the bone marrow. Theoretically there are some antifibrotic biologic agents on the market which could offer some benefit in slowing progression. They could be costly and may need pre-approval by your insurance. But there is no agent that can reverse the fibrosis (scarring) that occurs. Treatment is mostly supportive based on severity of symptoms.
Typically this is in the realm of Orthopedic surgery. There are support groups with good information regarding this and foundations such as the fibrous dysplasia foundation that can recommend physicians specializing in this rare disease.
Hope this helps,
Jack Stephens, MD
Hope this helps,
Jack Stephens, MD
