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Table of Contents

Preface

Introductory Comments

General Questions About FOP

Genetics of FOP

How FOP Affects the Body

Care and Treatment

Activities

Feelings About FOP

Helpful Addresses

Family Resources

Ideas for Independence

Medical Articles

Acknowledgments and Contributions

Introductory Comments

Fibrodysplasia Ossificans Progressiva is not an easy thing to say. Nor is the answer to the question "What is FOP?" an easy one. An understanding of FOP is complicated by the fact that over 300 years after its discovery, we still know relatively little about this extremely rare disease which affects approximately 2,500 people worldwide. But to make this last statement in many ways underestimates the effect of FOP. FOP is a disease which does not affect just one individual; it affects the entire family in ways that those unaffected by FOP can only begin to understand. When I was diagnosed with FOP in 1975, I know that my family (I, my parents, and a younger sister) had no idea what lay ahead of us. FOP was something we took one day at a time because we never knew what challenge lay around the corner. Today, though there is still much that we do not understand, we know so much more than we did 20 years ago. The thanks goes to Jeannie Peeper, founder of the International FOP Association, and to Drs. Fred Kaplan, Eileen Shore, and Michael Zasloff, for their dedication to on-going research and for their boundless compassion. While FOP has brought much pain and many tears into my life, it has also taught me about the gift of humanity.

Sharon L. Kantanie, August 1995

I remember that I called Dr. Fred Kaplan on a Thursday morning in April 1993. At 4:30 p.m. that afternoon, he returned the call regarding my inquiry into a summer internship. By the end of the conversation, I had begun an odyssey that I could not have anticipated would bring me so much knowledge and yet would allow me to give as well. I had been introduced to the FOP community.

With my interest in clinical research, Dr. Kaplan and I decided that I would write a children's book about FOP in such a way that young people could understand. In preparation for my first patient meeting, I read eagerly the endless supply of articles that Dr. Kaplan had kept pulling out of his file cabinets. Despite the factual information I had acquired, FOP was still a two-dimensional and abstract idea until I met Tiffany Linker. The summer of 1993 introduced me to many families in that clinical examining room on the second floor of the Silverstein Pavilion. The highlight of the summer was the Nashville Symposium. I credit much of the insight I gained about FOP to those few precious days during which so many people left an indelible impression on me.

Upon re-examination of the working draft in the summer of 1994, it became clear that the children's book was not sufficient in content to meet the needs of the FOP community. With the outstanding contributions and unflagging enthusiasm of Sharon Kantanie and Fred Kaplan, the children's book has expanded into a sophisticated resource package for parents and families. A companion book for children has been written by Sarah Steele and Marilyn Hair and completes the first phase of this project.

In What is FOP? A Guidebook for Families, I have tried to provide information about FOP in a clear and concise but sensitive manner. While I realize and hope that this work may be updated and revised in the future, I expect that this resource eventually will become obsolete. A cure for FOP will have been found.

Rachel B. Wagman, August 1995

The primary goal of FOP research is to determine the genetic cause of the disorder and to arrest the renegade bone formation at its source. In reflecting on our mission, I am reminded that it was not the FOP Laboratory that brought us to the patients, but the FOP patients who brought us to the Laboratory. While advances have been made during the past five years in understanding FOP, we have a long journey ahead. It is impossible to predict with accuracy how long the journey will be. While we ultimately seek incisive answers and definitive treatments, we are confronted daily with the immediacy of FOP and the challenges it presents.

I am reminded constantly of the agonizing dilemmas and towering frustrations encountered by the children and adults who live with FOP every moment of their lives, and by the families who struggle to cope with the challenges of affected relatives. It is a humbling experience. In one respect, FOP is a perplexing scientific riddle and one that desperately needs precise and effective solutions. In another respect, it is an inspiring story of determination, perseverance, and triumph of the human spirit -- the likes of which I have never seen before nor imagined.

This book was written for parents of children who have FOP, and for all of those interested in learning about the disorder -- its frustrations, dilemmas, challenges, and promises. This book will be updated as required. I hope that for now this book will help fulfill the goal of better understanding this enigmatic disorder and the effects it has on people's lives. I hope that one day this book will no longer be needed and can be relegated to the dustbin of medical history.

Frederick S. Kaplan M.D., August 1995