By filling out and submitting the FOP Patient Directory Sign-Up form, people with FOP will receive a variety of resources that can be helpful for the FOP journey:
Keeping good records of your medical history is the key to receiving quality care in any situation–especially in an emergency. The IFOPA is pleased to provide each individual with FOP a medical binder at no cost. Your medical binder stores all the important information you will need in one place. The binder is an organization system for medical documents that will prove invaluable in communicating with your medical team about a rare condition like FOP. Take the medical binder to you doctor appointments and all hospital stays for easy reference for your physicians. Doctors will appreciate having this medical data readily available during your appointment or hospitalization. Medical issues are difficult enough with FOP. 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. Your medical binder includes: emergency contact numbers, current and past prescription information, medical history, history of flare-ups and medications and supplements.
Due to the rarity of FOP, many medical personnel are not familiar with nor do they know how to treat someone with FOP. When faced with a medical emergency, it is often difficult to explain FOP and how it must be treated. To prepare for such an occurrence, three items are critical. The IFOPA provides each individual with FOP two (2) Emergency Cards, one (1) USB Flash Drive and one (1) Portable Pill Holder at no cost.
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 does 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.
Monthly FOP Connection eNewsletter
You will be subscribed to the monthly FOP Connection eNewsletter, which includes stories about IFOPA activities, events, FOP research breakthroughs and patients living with FOP.