Emergency Medical Information/Treatment Guidelines

How to Treat

FOP is accelerated by trauma
(including intra muscular injections) so handle the patient gently at all times & prevent falls. Evaluate the emergency & 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, consulting of expert doctors is strongly recommended 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 & intravenous meds are OK
3.) Take Intubation precautions: protect jaw and get expert anesthesia assistance since the jaw & 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.

What is FOP?

Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic disorder in which bone forms in muscles, tendons, and other connective tissue. Joints become locked and permanently immobile.

Emergency Medical Contacts

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

Rober Pignolo, MD
(507) 293-0813

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.

Treatment Guidelines

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

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, there are differences among individuals that 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 within an individual patient and his or her physician.

Introduction to the FOP Treatment Guidelines for the IFOPA Website

The document above 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 assure its widest distribution, the guidelines are written in English, and are accessible to physicians worldwide.

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.

Contact information for all physician-authors and all international medical consultants is provided at the end of the text. Please help assure that your/your child's physician has access to this important document.

- The Authors