Catalog of FOP Resources
FOP Emergency Card
n order to help its members be prepared for emergencies, the IFOPA created the FOP Emergency Card as a quick source of vital FOP information. It contains basic information about FOP (that the person’s joints may be fused, that tissue trauma accelerates the condition so the patient MUST be handled gently, that intramuscular injections are contra-indicated trauma that may cause a flare-up, etc.). It clearly explains the emergency precautions that should be taken before treating a patient with FOP. The FOP Emergency card also lists essential names and telephone numbers (e.g. Drs. Kaplan, Shore and Glaser) and contains information about tissue collection from a patient with FOP during an appropriate emergency. It explains that it is crucial to FOP research that every opportunity be taken to obtain live tissue from a person with FOP when doing so will not cause the patient additional harm. Extra tissue could be safely removed during emergency surgery or from a deep cut requiring stitches as long as no additional trauma occurs to the patient. The tissue must then be sent to the lab as per the instructions on the card. (For more information regarding tissue collection, please consult the Guidebook for Families or the IFOPA website at www.IFOPA.org. ) IFOPA members keep the FOP Emergency Cards in their pocketbooks, cars, and with babysitters and caregivers of people with FOP. Of course, one should always be with the person with FOP, whether he or she is an adult on a trip or a child on a playdate. It is probably too small for regular use by a school or camp nurse, but personalized information and a full list of local contacts and physicians would be better for them anyway. Sources/Directions: All new IFOPA members will receive an FOP Emergency Card in their new member packets. You can receive additional FOP Emergency Cards from the Betty Anne Laue/IFOPA Resource Center by contacting the IFOPA office at 1-407-365-4194 or together@ifopa.org. Price: $ Alternatives & Related Items: Please see Medic Alert Emblem and Fire House letter elsewhere in this catalog.
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