Hayden's Hope

What is FOP?

Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder where bone forms in otherwise normal soft tissues of the body (e.g., muscle, ligaments, and cartilage). This extra bone immobilizes joints over time, and eventually forms what amounts to a second skeleton – without joints. While the speed with which this “second skeleton” forms varies from patient to patient, the formation itself takes on a typical progression, usually starting with the neck and shoulders and then progressing to the lower section of the body and limbs.

Bone formation is not constant, but rather happens in periods known as “flare-ups.” Typical bone formation takes about six to eight weeks – this is true both for “normal” bone as well as the “extra” bone formed in an FOP patient. During a flare-up, the patient usually runs a low grade fever, is swollen in the affected area, and is generally uncomfortable. Flare-ups are often downright painful.

A flare-up can either be spontaneous, or caused by some sort of blunt trauma – a fall in the playground, for example. Unfortunately, while you can surgically remove the extra bone formed, the surgery itself is blunt trauma, and causes even more bone to form in its place. Even a visit to the dentist – if not handled properly – can cause a flare-up.

Hayden’s Hope is that before the FOP fully overtakes his body, by the time he’s 18 and has fully formed “adult” bones, the research for FOP will have come far enough to allow for surgical removal of extra bone that does NOT cause additional flare-ups.