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Fibrous dysplasia of the bone

FAQs

What is Fibrous Dysplasia (FD)? 

Fibrous dysplasia (FD) is a disease of the bones characterized by abnormal growth areas or lesions in one or more bones. FD can occur in any bone, including the skull, legs, arms, and the ribs.

Which doctor do I consult about FD?
A bone specialist is to be consulted.

What is McCune-Albright Syndrome?
McCune-Albright Syndrome is named after the two physicians who described it over 50 years ago. About 10 % of those with polyostotic FD have some associated endocrine (hormonal) problems including early puberty and areas of increased skin pigmentation called cafe-au-lait marks. These birthmarks have irregular borders, again primarily on one side of the body. The combination of polyostotic fibrous dysplasia, endocrine disorders, and café-au-lait marks is called McCune Albright Syndrome (MAS).

Is FD hereditary?
No. FD is not hereditary.

Why does one get FD?
The cause of FD is still unknown. The gene responsible for FD appears to be especially susceptible to mutations. Though rare, FD occurs in males and females and in people of all races across the globe. It is possible that the mutation occurs randomly. 

Is FD cancer?
FD is not cancer. Many people use to term "lesion" to mean any defect to avoid confusion of FD with malignant bone tumors. However, an FD bone lesion can turn cancerous; but this is very rare—in less than 1 % of FD cases.

Is there a permanent cure for FD? 
In general, FD cannot be cured today, unless it is only one lesion in one bone that can be completely eliminated by surgery. There are often unidentified FD cells in several bones and all cannot be eliminated by surgery. Some drug treatments can significantly diminish bone pain in long bones and cause some good bone to fill in the defects. Bisphosphonate drugs such as alendronate (Fosamax) that is used for treating osteoporosis or pamidronate (Aredia) have helped some people. However, these drugs do not work for all FD patients. Research is in progress to find other possible treatments. 

 

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