Tips for Making Every Doctor’s Visit Count When you Have EDS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Effectively managing a rare disease like Ehlers-Danlos syndrome (EDS) can be challenging.

Here are five tips to get the most out of your doctor’s appointments:

What’s new since the last appointment?

Do you have any new symptoms? Have any medications that you take changed (even over-the-counter ones)? What have you noticed since your last appointment? Do you have new symptoms that you have questions about? Have you read something about EDS that you have questions about?

Make a list of your concerns before the appointment, so you can get all your questions answered in a single visit. If there is new research that your doctor might not have seen, bring a copy with you so you can discuss it during the appointment.

Keep good records

Keep all of your medical records in a single location and take a copy with you when you go to the doctor’s appointment. With your records, there should also be a list of all current medications and supplements, along with dosage information and how often you take each one.

It’s also a good idea to keep your health insurance information with your medical records so you don’t have to hunt for anything when you go to the appointment.

Have a plan for the appointment

What are your goals for the visit? Do you need to discuss a medication change, concerns, or new symptoms? Make a plan for the appointment — what do you need to discuss? Keep your plan with you when you go to your appointment so you can refer to it and make sure that all of your concerns are addressed.

Record your appointment

Even when everything goes according to plan, doctor’s visits can move very quickly and there’s often a lot of new information. Use an app on your phone or other device to record what the doctor says and make sure you don’t miss anything. Make sure to get your doctor’s permission before you start recording.

Update your treatment plan

After each appointment, update your treatment plan, which should contain detailed information about your disease, what the treatment options are (with pros and cons as well as potential side effects), and the plan for effectively managing your care. Include information — how long will you be on a certain medication? How much will it cost? What potential side effects should you be aware of? Keep your treatment plan with your medical records and review it often.


Last updated: Aug. 16, 2019


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 health provider 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.