If you or a loved one has recently been diagnosed with Fibrous Dysplasia (FD) then your first question is probably trying to understand the basics of Fibrous Dysplasia, starting with what is Fibrous Dysplasia?
Fibrous dysplasia is a rare condition that arises from abnormal bone cells that produce weak, fibrous bones that are potentially prone to fractures or bending. The type and severity of fibrous dysplasia complications depend on where in the skeleton it is located and how many abnormal bone cells are present in that location. Although Fibrous dysplasia is a genetic disorder, it is not hereditary.
Fibrous dysplasia severity varies among individuals. Fibrous dysplasia can affect any of the bones in the body, but is most common in the bones of the legs, upper arms, skull and face bones, the ribs and the pelvis. If a single bone is affected, it is called monostotic Fibrous dysplasia. If multiple areas or bones are affected, it is called polyostotic Fibrous dysplasia.
Some people may have Fibrous dysplasia without ever knowing it, their diagnosis only coming after getting an x-ray for other medical reasons. Others, especially those with polyostotic Fibrous dysplasia may have one or more symptoms, including bone pain, enlargement or deformity of their bones, and an increased risk of bone fractures due to bone weakness. Other symptoms may include difficulty walking or a curved spine caused by scoliosis.
Managing Fibrous dysplasia can be complicated, as there currently is not a cure and the condition can include many complications such as bone fractures, deformity, functional impairment, and pain. The FD/MAS Alliance has created a toolkit to help manage these complications. It includes research, treatment recommendations, ways to track medication and doctors and much, much more.
Fighting conditions like Fibrous Dysplasia can be a long battle, which is why the FD/MAS Alliance also is always looking for volunteers to help us move research forward and to assist us in reaching our fundraising goals. We are also always seeking donations to help strengthen our community and increase our investment in research and education to meet the needs of those living with FD/MAS.