Treatment

There is currently no proven effective treatment or cure for Fibrodysplasia Ossificans Progressiva,  but there are several potential therapies currently undergoing clinical trials. Research into understanding and treating FOP is ongoing.

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 can not 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.

For more information on the treatment of FOP, see the current guidelines from the International Clinical Council on FOP at the link at the top of every page on this website.

You can also access an overview in the International FOP Association video on Treatment, and other topics, on our videos page.

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)

These very experienced FOP doctors can be contacted to assist your local treating team if required:

Frederick Kaplan, MD
University of Pennsylvania
Tel: + (215) 294-9145 (clinical office)
Tel: + (215) 545-0758 (home)
frederick.Kaplan@uphs.upenn.edu

Robert Pignolo, MD, PhD
Mayo Clinic
Tel: + (507) 293-0813
Tel: + (507) 293-7940
pignolo.robert@mayo.edu

Edward Hsiao, MD, PhD
University of California, San Francisco
Tel: +(415) 476-9732
edward.hsiao@ucsf.edu

There is also a list of local clinicians who have helped care for people with FOP available here, for people seeking ongoing care.