Understanding FOP

FOP is a progressive and debilitating genetic disorder characterized by heterotopic ossification (HO).  The defining sign present at birth is a malformation of the great toes, which often appear to angle inward and lack a joint (in some cases, the great toes might even be missing).  In early childhood, children develop soft tissue swellings that transform into bone.  Development of such lesions is exacerbated by trauma, and surgical intervention leads to dramatic and explosive new bone growth.  The median survival of FOP patients is approximately 45 years, and death often results from complications of thoracic insufficiency syndrome. 

FOP is an extremely rare condition affecting about 1 in 1,000,000 people.