Fibrodysplasia Ossificans Progressiva Support Group

Fibrodysplasia ossificans progressiva (FOP), is a rare disease of the connective tissue. A mutation of the body's repair mechanism causes fibrous tissue (including muscle, tendon, and ligament) to be ossified (turned to bone) when damaged. In many cases they can cause joints to become permanently frozen in place. The growths cannot be removed with surgery because such removal causes the body to "repair" the area of surgery with more bone.

Over time, as more bone grows and the patient loses mobility in more and more joints, it may become impossible for the patient to reach, walk, eat, or even breathe. The disease is usually fatal as bone crushes the internal organs. People with FOP usually lose all mobility by the age of 30 and die by the age of 40. There is no known cure.

Children born with FOP characteristically have short big toes. The first "flare-up" that leads to the formation of FOP bones is usually before the age of 10. Often, the tumor-like lumps that characterize the disease appear suddenly overnight. Because the disease is so rare, the symptoms are often misdiagnosed as cancer. This leads doctors to order biopsies, which can actually exacerbate the growth of these lumps.