Patients and Families


FOP is so rare that it is unlikely that emergency personnel, such as yard doctors and ambulance attendants, will have heard of it — let alone know the proper ways to care for a patient with the condition. Furthermore, the heightened level of emotions and anxieties surrounding most emergencies interfere with the calm explanation of FOP.

In preparation for such an emergency, we recommend two things to ensure quick access to essential information regarding FOP and emergency protocols:

MedicAlert is a nonprofit membership organization that provides continuous access to accurate medical information in an emergency. The member wears a symbol on a necklace or bracelet that is recognized by emergency responders around the world. When responders see the logo engraved with your personal ID number and essential medical information, they know to call the 24-hour emergency response center immediately before treating, unless the life of the patient is at risk from a few minutes delay.

However, because of FOP's rarity, simply putting the name on the emblem will not impart any useful information to the medical persons involved, therefore, Dr. Kaplan suggests the following wording for the medical alert emblem: EXCESSIVE BONE FORMATION DUE TO GENETIC DISORDER. MUST HANDLE GENTLY.

Learn more about MedicAlert or watch our webinar on preparing for medical emergencies. The MedicAlert symbol is internationally recognized and the organization has language lines to accommodate international families.

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