Guidebook Home

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

Preface

This guidebook is directed to the parents and families of children who have FOP, not because they were the only anticipated audience, but because too often in the past they have been the neglected audience unable to find anything to help them understand what was happening to their child.

The questions and answers presented in the first portion of this book try to anticipate situations in which parents of FOP children may find themselves. While many common features of FOP exist in almost everyone who is affected, it should be noted that FOP affects each person in different ways. Certain generalizations have been made using the latest clinical and research data in an effort to help parents anticipate the needs of their child.

The second portion of this book presents more in-depth articles on certain subjects of interest to families affected by FOP. These articles include "A Medication Guide for Patients Who Have FOP" and "Surgery and FOP: When to Say Know." There is also a list of resources for families, which includes information on special equipment to aid in daily living. These articles complement the question and answer section, but can exist on their own merits as well, providing important information for parents and families.