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Due to the rarity of FOP, many medical personnel are not familiar with nor know how to treat someone with FOP. To prepare for such an occurrence, three items are critical. The IFOPA can provide each individual with FOP two (2) Emergency Cards, one (1) USB Flash Drive and one (1) Portable Pill Holder at no cost.
Take the Emergency USB Flash Drive to your doctor appointments and all hospital stays for easy reference for your physicians. There are pre-loaded forms for you to add personalized medical information. Having personalized medical information at your fingertips helps to reduce the stress and in some cases will provide the opportunity for you to get better care.
The card is laminated, fits in a wallet and contains the following information:
- FOP Treatment Guidelines for use in an emergency situation
- Contact numbers for doctors
- The importance and instructions for collecting tissue samples in the event of emergency surgery or a deep cut requiring stitches
Emergency USB Flash Drive
The flash drive has an attached key chain for securing on clothing and has a medical symbol printed on the outside. It contains:
- Pre-loaded forms for easy insertion of personal medical information
- FOP Treatment Guidelines
- Room for additional medical information
Portable Pill Holder
The pill holder is metal and has a secure rubber seal making it virtually waterproof. It has an attached key chain which can be secured on clothing.
- It is recommended that an emergency dose of Prednisone be kept in the holder.
- The pill holder is NOT childproof and should be kept securely away from young children.
What is FOP? A Guidebook for Families
For FOP families, the best place to begin is What is FOP? A Guidebook for Families first published in 1995 in conjunction with the Second International Symposium on FOP. This third edition is a comprehensive look at FOP, answering many questions commonly asked of families and medical professionals. The Guidebook contains information by Dr. Fred Kaplan and others regarding research and treatment options, as well as articles by parents of afflicted children and adults with FOP offering insights into the condition.
What is FOP? Questions and Answers for the Children
A separate guidebook written for an audience of children ages 7-14, What is FOP? Questions and Answers for the Children, explains FOP in easy-to-follow language, and is recommended for younger children with adult supervision. This book was written by Sarah Steele and her mother Marilyn Hair. The authors hope that this book answers some of your questions and gives ideas about where to find more help as you adjust to living with the mysterious condition we call FOP.