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

Medical Articles

The question and answer portion of this book was designed to be complete in addressing the needs of families who are just learning about FOP and the complex challenges it presents, as well as the needs of families who already know about basic aspects of FOP, but need guidance regarding specific problems which may occur, or simply desire to know everything they can.

How much a person needs (and wants) to know about FOP should be a personal decision. However, the authors of this book recognize that there may be times when you want (or need) to understand an issue more thoroughly than it can be presented in a question and answer format. For this purpose, certain articles written specifically for families dealing with FOP appear in this appendix.

"FOP: Patterns of Progression" summarizes a comprehensive survey of 44 people who have FOP, detailing such facts as age of onset and the ages at which specific areas of the body are most likely to be affected.

"A Medication Guide for Patients Who Have FOP" describes all medications which may be of value to people with FOP, particularly in alleviating pain from acute flare-ups.

"Immunizations in Children with FOP: Do's, Don'ts, and Dilemmas" offers guidelines for immunizing children with FOP, as intramuscular injections pose a serious risk.

"Minimizing Risk: Dental Precautions for People with FOP" discusses the possibility that the jaw will fuse in people with FOP, as well as the heightened risk of intramuscular injections of novocaine during dental procedures.

"Dental Guide for People with FOP" offers a concise picture of dental concerns for people with FOP.

"A Guide for Emergency Situations Involving People with FOP" is a concise guide for emergency situationa.

"Surgery and FOP: When to Say Know" reviews the fact that surgery to remove FOP bone is not recommended. However, the article also points out that emergency surgery may be necessary sometimes.

"FOP and Life-threatening Emergency: What to Do about Anesthesia" points out the need to be prepared for emergencies in advance, particularly when jaw movement is limited.

"Catastrophic Falls in People with FOP" summarizes a survey on serious falls resulting in injury in people with FOP.

"Article Abstracts" offers brief summaries of articles dealing with FOP which have appeared in medical journals over the past few years.

"Obtaining Tissue Specimens During Emergencies" points out the limitations placed on research because of the lack of tissue specimens due to the risk of trauma. As obtaining tissues during emergencies would pose no extra risk, and would greatly contribute to research, guidelines for collection of tissues are offered.