For Medical Professionals

Emergency medical information and treatment guidelines for medical professionals

Fibrodysplasia ossificans progressiva (FOP) is a rare genetic disorder in which bone forms in muscles, tendons, and other connective tissue. Joints become locked and permanently immobile. Learn more.

FOP is accelerated by trauma (including intra muscular injections) so handle the patient gently at all times and prevent falls. Evaluate the emergency and protect the life of the patient as if FOP were not an issue. FOP itself rarely causes an emergency.

PLEASE follow these emergency guidelines at all times. If time permits, consult a specialist regarding potential risks of any surgical or medical interventions being considered.

1. Avoid deep tissue trauma: including intramuscular (IM) injections, if possible
2. Stabilize & treat: NO IM injections but venipuncture, subcutaneous and intravenous meds are okay
3. Take intubation precautions: protect jaw and get expert anesthesia assistance since the jaw and neck may be completely or partially locked
4. Consulting of expert doctors is strongly recommended regarding potential risks of any surgical or medical interventions being considered.

Emergency Medical Contacts

Frederick Kaplan, MD
The Perelman School of Medicine - The University of Pennsylvania
(215) 294-9145 (clinical office)
(215) 545-0758 (home)

Robert Pignolo, MD, PhD
Mayo Clinic
(507) 293-0813 or 507-293-7940

Edward Hsiao, MD, PhD
University of California, San Francisco
(415) 476-9732

For a complete list of medical specialists from around the world, download the current Treatment Guidelines to read The International Clinical Consortium on Fibrodysplasia Ossificans Progressiva. The list begins on page 84.

Treatment Guidelines

Download The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Guidelines

The proper care and management of FOP requires the ongoing involvement and consultation of a physician. No patient should be self-medicated without the advice and guidance of a physician. Please share this document with your/your child's physician.

The Treatment Guidelines document contains detailed medical information and guidelines on the symptomatic management of FOP. In order to continually provide updated guidelines with rapid access to physicians treating FOP patients worldwide, multiple simultaneous translations are not presently feasible. To ensure the widest distribution, guidelines are written in English and are accessible to physicians worldwide.

We emphasize that this report reflects the authors' experience and opinions on the various classes of symptom-modifying medications and is meant only as a guide to this controversial area of therapeutics. Although there are common physical features shared by every person who has FOP, differences among individuals may alter the potential benefits or risks of any medication or class of medications discussed here. The decision to use or withhold a particular medication must ultimately rest with an individual patient and his or her physician.

Contact information for all physician-authors and all international medical consultants is provided at the end of the text.


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