Alert Cards for Patients With EDS

If you have Ehlers-Danlos syndrome (EDS), you may want to consider carrying a medical alert card with you. These alert cards can help reduce the risk of further injury in an emergency.

What is EDS?

EDS is a group of genetic disorders that result in defects in the structure and function of connective tissues. The 13 types of EDS result from mutations in at least 20 different genes. Most of the mutations cause defects in collagen. These defects can affect the skin, joints, and blood vessels, making them looser and more prone to injury.

What are potential complications of EDS?

Some forms of EDS, especially vascular EDS, can make patients more prone to injury and emergency situations. Patients may experience sudden rupturing of blood vessels or the intestines, which can be life-threatening.

Joint hypermobility can lead to dislocations during handling by medical staff. EDS can make the skin easy to tear or bruise when handled. Weak connective tissue can also make the spine more unstable and at higher risk of injury.

In addition, medical procedures could trigger mast cell activation disorder in patients with EDS.

The looseness of joints and the fragility of the lining of tissues make general anesthesia a risk for patients. Surgery carries increased risks, such as problems with wound healing and excessive bleeding.

What are medical alert cards?

Medical alert cards contain information about EDS including life-threatening symptoms clinicians should look for, how they should carefully handle patients, and emergency procedures that should be performed or avoided.

The cards also include identifying information such as your name, date of birth, allergies, emergency contacts, and primary care physician.

The Ehlers-Danlos Society and other organizations offer emergency card options that you can keep in your wallet.

You may want to have alert cards in multiple languages if you plan on traveling or live in an area where multiple languages are typically spoken.

Why are alert cards important?

Physicians may not be familiar with EDS and its treatment. Depending on the emergency situation, you may not be able to explain your disease and the risks associated with certain treatments. In an emergency, the physician may not have time to obtain and read your medical records to take proper precautions when treating you.

Some symptoms such as diffuse or localized pain in the abdomen may not appear serious at first unless the physician is aware of the increased risk of arterial or intestinal bleeding in EDS. Also, rupture of blood vessels in the brain may appear as signs of drug overdose, which could delay time for critical interventions.

Medical alert cards containing information about EDS, its potential complications, and the dangers of certain treatments could help prevent injury and be life-saving in emergencies.

Last updated: Nov. 11, 2020

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.