Arrive with your prepared lists to each visit.
- Every EDSer should have a prepared list of allergies, current and past medications, and all the contact information of the physicians that are a part of their health care team.
- Many EDSers tend to have several co-morbidities in addition to EDS. It's always a good idea to have every relevant and current diagnosis listed and provided to each doctor you add to your team.
- Along with your permanent lists, you should also arrive with a prepared list of all your current symptoms that are affecting your daily living, listing the most severe first and the least severe last. After listing the main symptom, include a brief and clear description of it, and what you believe may be causing it, or making it worse. List it's frequency, severity, etc.
- Another prepared list to arrive with should Include your pressing questions and requests on your list. Requests include but are not limited to requesting a signature for a handicap hangtag application, providing you with a letter for airport security, etc.
- Make sure to ASK QUESTIONS, if you do not understand what the doctor is saying.
Arrive with a friend or relative that is willing to take notes during the visit.
- It is very difficult to remember everything after a doctor's visit. Make sure who ever accompanies you to your visit arrives with a pen and paper and actively takes notes as the physician advises you.
- When patients are accompanied by a loved one, physicians tend to be more considerate and also tends to more readily believe the patient's reported symptoms when someone else is able to confirm that the patient's problems are as they say.
- Sometimes physicians tend to use abbreviations and medical terminology when discussing management and treatment regimens with patients. When you have a loved one with you, make sure you give them permission to ASK QUESTIONS, if they don't understand what the doctor is saying or advising you to do.
Welcome to our Doctor Database! This service is still in the works. Our team is constantly networking and educating the medical community, seeking physicians of various specialties willing to treat and manage patients with Ehlers-Danlos Syndrome and other similar conditions. You can help by submitting your recommended physician information to be added to the database. Please note that all recommended physicians will be contacted in order to confirm that they are willing to accept new patients with Ehlers-Danlos Syndrome
Below you will find the basic form of the Doctor Database. Our team is working around the clock, confirming doctor contact information, abilities, and willingness to treat new patients. If you discover any incorrect information and/or typos, please contact us. You may access the available lists by clicking on your state and/or country of interest. We thank you for your patience as we continue to develop this resource for the community.
Helpful Tips for Your Doctor Visits
Don't be afraid to arrive with Relevant Articles and a Good Attitude.
- You're doctor may not be an expert on EDS and all of its complexities and comorbidities; therefore, it can be very useful to bring along relevant EDS literature that address symptoms that you are currently dealing with. You can find several EDS Articles at our Research Library.
- Highlighter markers are your best friend. Make sure you read the articles before handing it over to your physician(s). Highlight the parts that you find relevant to your specific case and always be prepared to hand the article over to your physician.
- Arriving with a positive attitude is vital to receiving quality health care from your doctors. Many doctors feel at a disadvantage when attempting to treat and manage patients with EDS. There are no cures for EDS and no established treatment options. If you arrive with a positive, REALISTIC, expectation of your doctor, they will most likely do everything in their power to provide you with the help and support you are seeking.
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Other EDS Doctor
Our team of volunteers are in the process of contacting EDS doctors that have been listed in other EDS databases in order to confirm their information and their willingness to treat new patients. We appreciate your patients as we work to develop this resource for the community.
Recommend a Doctor
EDS-friendly health care professionals are very hard to find. If you have found one, please (with their permission), share their information with the rest of the community. EDSers United will verify all contact information before posting.