Preparing for a medical emergency

Marfan syndrome can send you to the emergency room (ER), typically for heart problems/chest pain, but also sometimes for breathing problems (collapsed lung) or vision problems (detached retina). You need to be prepared, and have medical information accessible even if you are unconscious or unable to speak.

National Marfan Foundation (NMF) resources

How to receive proper care in the emergency room

Aortic dissection is the leading cause of premature death from Marfan syndrome. Tragically, not all ERs and ER doctors are well-trained to recognize and properly treat an aortic dissection. People with Marfan syndrome have died after being sent home from the ER with an aortic dissection that was not diagnosed. The National Marfan Foundation's "How to Receive Proper Care in the Emergency Room" web page is a must-read, providing key tips on successfully advocating for yourself if you go to the ER with chest pain or other symptoms of aortic dissection.

The NMF's Emergency Medicine Campaign for the Diagnosis and Treatment of Aortic Dissection, developed in cooperation with the New York State Department of Health, provides medical professionals with information about the emergency diagnosis and treatment of aortic dissection. The goal is to reduce the number of preventable tragedies that result from this life-threatening condition. Most of the materials in the Emergency Medicine Campaign, including a CME accredited video, are available for free to hospital personnel in the United States. Visit the Medical Professionals section of the NMF Marketplace to request the information.

NMF Emergency Alert Card

The National Marfan Foundation's Emergency Alert Card (requires PDF reader) is a wallet-sized card that alerts medical personnel to your Marfan status and urges them to rule out aortic dissection before sending you home from the ER.

Non-NMF tools

Wallet cards

The American Red Cross recommends that seniors and anyone with chronic medical issues prepare an emergency alert wallet card, and stash copies of it everywhere you go - in your car, in your purse or wallet, at your office, etc. The card should typically be a single sheet of paper that folds accordion-style onto itself to become "wallet" sized. Some hospitals and health care systems will provide templates you can print and use, like the "30 Square Inches That Can Save Your Life" template offered by St. Joseph Medical Center in Maryland, or the "ICE: In Case of Emergency Medical Information" card from New York Compensation Managers Inc.

In general, wallet-sized health information cards should contain your name and contact info., your emergency contact's name and contact info., a list of your medications and supplements, and notes about major medical conditions that emergency personnel should be aware of (like aortic aneurysms, spinal fusions, etc.). The Red Cross's "Tips for Creating An Emergency Health Information Card" page provides additional information about what to include on your card.

The Red Cross also includes a medical information summary template in its Disaster Preparedness for People with Disabilities guide, available in PDF or text.

Advantages of using wallet cards: Cheap, easy to update, unobtrusive

Disadvantages of using wallet cards: Aren't attached to you (so the information may not come with you to the hospital), it takes precious time for someone to find the card in your purse or wallet, someone needs to know you have a wallet card

Medical alert jewelry

According to American Medical ID, 95% of emergency medical personnel look for medical alert jewelry, special bracelets or necklaces engraved with the medical caduceus symbol and a few key medical details about the person wearing the jewelry. Engraved details might list things like your name, "Marfan Syndrome", "Aortic Aneurysm," "Beta-blocker", "Coumadin", "Spinal Fusion", etc. Your doctor can help you decide what information to include.

Once limited to rather ordinary-looking bracelets and necklaces, medical alert jewelry is starting to take on new, often more kid-friendly forms, including sneaker tags, rubber wrist bands, car decals, sport wrist bands, watches, dog tags, money clips, and charms and zipper pulls that can be attached to backpacks/coats/purses.

Advantages of medical alert jewelry: If it is attached to you, it should make it to the ER with you

Disadvantages of medical alert jewelry: Limited space to provide medical information, difficult and expensive to update or replace, can be expensive, not necessarily stylish

Monitored medical alert systems

Monitored medical alert systems, primarily marketed to seniors who live alone, provide wearable, water-resistant pendants and wristbands that provide push-button access to a call center representative. If you were to fall in the shower, for example, and could not get to a phone to call for an ambulance, you could push the button on your wristband/pendant and be connected to a customer service representative. The representative could call 911 for you and provide the 911 operator with information about your medical conditions, emergency contacts, etc.

Vendors include Health Watch Medical Alert Systems from Medic Alert, MedicalAlarm.com, and AmericanMedicalAlarms.com.

Advantages of monitored medical alert systems: Easy access to assistance in a home medical emergency

Disadvantages of monitored medical alert systems: Expensive, may require service contract, only work inside your home

NOTE: MarfanLife.net and the Marfan Life Wiki have no financial interest in any of the products or services mentioned on this page. Products/services cited are examples only and do not constitute a recommendation or endorsement.