Almost no American doctors have learned about EDS, so searching for an “EDS-educated doctor” is almost certain to end in failure. But you do have a chance of finding an educable doctor who could do some reading about your condition, and could then help you better. So, if you have, or think you might have, Ehlers Danlos Syndrome (EDS), then your most important task is to educate yourself about your condition, and then share what you’ve learned with your current doctor or doctors.
If you do want to search for a doctor who already knows about EDS – rare as they are – then your best resource is your nearest online EDS support group. Use Google or social media to search for “EDS support groups in [name of your state].” The national website EDSawareness.com also keeps details of a few EDS-aware doctors, as does the Ehlers Danlos Society at ehlers-danlos.com. These two sites also have links to lectures and other resources on EDS. The quality of these is increasingly good.
I suggest you read my article The EDS Predicament, on this website. It includes suggestions on how to approach your local doctor to share the information you’ve learned. For your doctor, the main article is Medical Care of Patients with a Hypermobility Disorder. Make a copy of that, take it to your doctor and ask them to study it and then to see you to go over it with you. It will take about two coffee-breaks for your doctor to study it.
There are other articles on this website aimed at educating orthopedists, and gastro-enterologists, about EDS. Their titles are self-explanatory. Also, there’s an article that summarizes what you need to know, and what your specialist needs to know, for all the main specialties. It is EDS: What Your Specialists Need to Know.
For much more detailed and in-depth information, on almost all the issues involved in EDS, your best resource is the book Disjointed, edited by Diana Jovin and available through Amazon. I strongly recommend it. Chapters are aimed at either patients, or their doctors, or both. Also, there are lots of wonderful lectures and other resources on the website of the Ehlers Danlos Society at www.ehlers-danlos.com.
I regret that I cannot consider seeing new patients for the time being. However, I am helping another practitioner to develop a practice for children, up to age 18, who have EDS (or whose parents think they may have it). When this happens, I’ll announce it here. Also, the Atrium Health network in Charlotte, NC, is putting together a clinic for children with EDS, staffed by pediatric specialists.
Alan Spanos, MD