12 months have passed since the article Neurological Symptoms in FOP was published in the Journal of Neurology. The IFOPA is pleased to have permission to share this important paper on our IFOPA website along with a summary of these important findings by Drs. Kaplan and Shore.

Thank you to all of our FOP members who participated in Dr. Kitterman's study by completing the questionnaire.

Joseph Kitterman (shown on left), Jonathan Strober, Lixin Kan, David Rocke, Amanda Cali, Jeannie Peeper, Jennifer Snow, Patricia Delai, Rolf Morhart, Robert Pignolo, Eileen Shore, and Fred Kaplan published a paper in the Journal of Neurology entitled, “Neurological symptoms in individuals with fibrodysplasia ossificans progressiva.”  Neurological problems have not previously been directly linked to FOP, but neurological symptoms have been repeatedly reported by FOP patients. To determine the prevalence of neurological symptoms and their characteristics in individuals with FOP, this study group conducted a survey of 470 patient members of the International FOP Association (IFOPA) using a questionnaire about neurological symptoms. There were 168 responses from 30 countries representing 36 per cent of IFOPA members.

Chronic neurological symptoms were reported by 51% of individuals. Prevalence of neuropathic pain was significantly increased compared to the general population and ten-fold more common in females than in males. Of those with neuropathic pain, 94% reported other sensory abnormalities. Prevalence of recurrent severe headaches was similar to that in the general population, but prevalence in females with FOP was almost four-fold greater than in males. Prevalence of neuropathic pain, headaches, and other sensory abnormalities was substantially higher in post-pubertal females; 33% reported symptoms worsened during menstrual periods. Worsening of neurological symptoms during FOP flare-ups was reported by 22% of individuals with FOP. Three patients with FOP reported myoclonus - a prevalence much greater than that reported in the general population. The worldwide survey indicated that neurologic symptoms were common in individuals with FOP. The authors speculated that symptoms were related to effects of dysregulated BMP signaling on the central and/or peripheral nervous systems.