What is FOP?
FOP is one of the rarest, most disabling genetic conditions known to medicine, causing 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.
FOP is a genetic disease affecting 1 in 2 million people. There are an estimated 800 confirmed cases worldwide, and 285 known cases in the United States. There are no ethnic, racial, or gender patterns.
Currently, there is not a treatment or cure for FOP. Malformed big toes, which are present at birth, along with tumor-like masses that first appear on the head and shoulders of infants and toddlers are highly suggestive of FOP.