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What is Fibrodysplasia Ossificans Progressiva (FOP)?

One of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another

Genetic disease affecting 1 in 2 million people

Approximately 900 confirmed cases worldwide

285 known cases in the United States

What is a flare-up and is it painful?

A flare-up occurs when the body starts to generate new bone. No one knows what initiates this process, but once it begins, it leads to tissue swelling and much discomfort. Sometimes the individual will not feel well and may develop a low-grade fever. While there is no medication or therapy that can stop the process of bone formation once it has begun, a physician can prescribe medicine to help relieve the pain. A single flare-up may continue for as long as 6-8 weeks. Multiple flare-ups may also occur during an active period of FOP. When a flare-up is in progress, joint stiffness may occur overnight. The stiffness comes from swelling and pressure inside the muscle during the earliest stages of new bone formation. While flare-ups are usually painful, the degree of pain can vary. Most people find that the pain subsides when a flare-up is over; it appears that it is the process of extra bone formation, rather than the extra bone itself, that usually leads to pain.

Will FOP get worse? Does it ever stop or go away?

Unfortunately, FOP does not improve over time. The "P" in FOP stands for "progressiva." That means that FOP will progress, or get worse, as a person ages. As FOP is part of a person's genetic make-up, people with FOP are born with the condition, even though the extra bone may not have appeared at birth. So people with FOP will not outgrow the condition. Nor can the extra bone that has been produced by FOP disappear. The body of a person with FOP does not make extra bone all of the time; a person with FOP may go months or years without a flare-up. Yet there is always a chance that extra bone can form, either without any warning ("spontaneous flare-up") or following trauma, such as a bump, fall, muscle overexertion, an injury, intramuscular injections, surgery, or even some viruses. It is unclear why the disease is active some times and quiet or dormant at other times.

What parts of the body are involved in FOP? How does FOP affect mobility?

FOP affects the neck, spine, chest, shoulders, elbows, wrists, hips, knees, ankles, jaw, and many areas in between. The progression of ossification follows a characteristic pattern. Usually extra bone forms in the neck, spine, and shoulders before developing in the elbows, hips and knees. The muscles of the diaphragm, tongue, eyes, face, and heart are characteristically spared. The well-documented and characteristic progression of FOP, as well as the regions not affected, likely hold important clues to the cause and development of the disease.

FOP affects mobility because the body's joints, such as the knees or the elbows, connect the bones and aid in movement. In FOP, extra bone replaces the ligaments (which cover the joints), as well as muscles and tendons (which move the joints). Consequently, movement in areas affected by FOP becomes difficult or impossible.