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 a little 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.
So, please 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 a few people, with severe or complex EDS-related illness, these steps may not be enough. For them, it may be helpful to see me to assess their whole condition thoroughly, and for me to then make detailed recommendations to their doctor (or doctors). I can also follow up on how this works out, and do any troubleshooting later, if necessary. If you think you’re in this category, then contact me by email at email@example.com. Write a brief account of the reason you’re seeking an appointment. I’ll get back with you within 3 days to explore whether it would truly be helpful for me to be involved in your care.
Alan Spanos, MD