FOP Treatment

There is currently no proven effective treatment or cure for FOP.

Some steroid medications (prednisolone) may assist in reducing swelling and the risk of bone formation if administered as soon as possible. This is not routinely recommended for all swellings, only those affecting the major joints (shoulders, hips, knees, elbows, wrists, jaw).

A person with FOP cannot have surgery to remove bone. Surgery involves a form of trauma to the tissues involved. This often causes explosive new bone formation, possible in excess of the amount removed by the surgery.

Key points for emergency treatment:

  • FOP is accelerated by trauma so patients must be handled gently and falls must be prevented. Evaluate the emergency, and if life-threatening, protect the patient as if FOP were not an issue. FOP itself rarely causes an emergency.
  • AVOID DEEP TISSUE TRAUMA – including intramuscular injections (IM) if possible
  • STABILISE AND TREAT – No IM injections but venipuncture, subcutaneous and intravenous meds are okay
  • TAKE INTUBATION PRECAUTIONS – protect jaw and get expert anaesthesia assistance as the jaw and neck may be completely or partially locked
  • CONSULTING OF EXPERT DOCTORS – strongly recommended regarding the potential risks of any surgical or medical inventions being considered
  • No patient should be self medicated without the advice and guidance of a doctor.
  • If time permits, consulting of expert doctors is strongly recommended regarding potential risk of any surgical or medical interventions being considered.

Emergency Medical Contacts (International)

Frederick Kaplan, MD
(215) 294-9145 (clinical office)
(215) 545-0758 (home)

Robert Pignolo, MD
(215) 294-9145 (clinical office)
(215) 834-6285 (text)

For more information on the treatment of FOP, see the Medical Management of FOP: Current Treatment Guidelines. You can also access an overview in the International FOP Association video on Treatment, specific topics on our videos page.