Critical Points for EDS Patients When Seeking Emergency Care or Going to the ER

For Ehlers-Danlos Syndrome (EDS) patients, navigating emergency care can be daunting and even life threatening for some, especially those who also have dangerous mast cell disorders. With a complex and often misunderstood condition, it’s essential to be prepared and informed when heading to the emergency room (ER). Here’s a few tips to help you ensure you receive the best care possible during an emergency.

1. Bring Your Medical Information

• Bring Your Medical Executive Summary: Always carry a detailed medical summary that includes your EDS diagnosis, a list of your medications, known allergies, and any comorbid conditions like POTS (Postural Orthostatic Tachycardia Syndrome) or MCAS (Mast Cell Activation Syndrome). This summary should also highlight any past surgeries or complications related to EDS.
• If possible, bring a letter from your primary care physician or specialist that explains your specific needs related to EDS. This can help ER staff quickly understand your situation.
• Get an EDS Emergency Card printed and share it.

2. Communicate Clearly About Pain Management

• EDS patients often experience severe pain, and managing it effectively in an ER setting is crucial. Clearly communicate your pain levels and explain that you may have a high tolerance due to chronic pain. Clearly state your wishes for pain management medications and any potential reactions.
• Inform the ER staff if you have specific pain management protocols or if certain medications do not work well for you. Be aware that some common pain medications may not be effective due to your condition.

3. Highlight Joint and Vascular Concerns

• EDS can affect your joints and blood vessels in ways that might not be immediately obvious to ER staff. If you have a history of joint dislocations, subluxations, or vascular issues, make sure the healthcare team is aware.
• If you experience sudden, severe pain or swelling in a joint, or unexplained bruising, these could be signs of a vascular complication, which requires immediate attention.

4. Understand Potential Misunderstandings

• EDS is still not well understood by many healthcare providers, especially those providers in ER settings who see people with cut off limbs, heart attacks, strokes and gunshot wounds. Remember, you may not be bleeding or look sick on the outside. Help them understand the nature of your invisible illness as best you can. Be prepared to explain that your symptoms are part of a broader connective tissue disorder.
• Bring someone with you if possible to aid in communicating your needs.
• If you feel your concerns are being dismissed or misunderstood, politely ask for a consult with a specialist or request that your primary care physician or EDS specialist be contacted for guidance.

5. Be Aware of Surgical and Anesthesia Risks

• If surgery or any invasive procedure is being considered, inform the ER team of your increased risk for complications, such as typical EDS poor wound healing or unusual responses to anesthesia.
• You may need to request specific precautions or ask for a consult with an anesthesiologist familiar with EDS to ensure your safety during any procedures.

6. Advocate for Yourself

• You know your body and your condition better than anyone. Don’t hesitate to advocate for your needs, ask questions, and seek clarification on any treatments or tests being proposed.
• If you feel your concerns aren’t being addressed, it’s okay to ask for a second opinion or request a different physician.

7. Plan Ahead

• Whenever possible, plan ahead for potential emergencies. Identify the nearest ERs that are familiar with EDS or have experience with rare diseases.
• Consider wearing a medical alert bracelet or carrying an emergency card that highlights your EDS and any critical information that ER staff should know.

Emergency situations can be overwhelming, especially with a complex condition like EDS. Remember, your safety and well-being are paramount—never hesitate to speak up for what you need. Get up and leave if you’re not being handled with respect.