FOP is one of the rarest diseases in the world. Few doctors encounter it in medical school. As a result, misdiagnosis of FOP has caused a great deal of pain and suffering for FOP patients and families worldwide.
One of the goals of the FOP community is to better educate physicians and healthcare workers around the world about the proper diagnosis of FOP so that dangerous misdiagnoses will not occur in the future.
The keys to diagnosing FOP are the presence of the malformed great toes and the rapidly appearing soft tissue swellings that form typically in the neck, shoulder, back and sometimes scalp or head.
Three of the most common reported misdiagnoses for FOP are:
FOP lesions grow much more rapidly than any cancer could ever possibly grow. If malformed great toes are present, DO NOT BIOPSY. Learn more.
Aggressive Juvenile Fibromatosis
Patients with aggressive juvenile fibromatosis do not have malformed great toes. Learn more.