Patient Resources by State
How we approach recommendations: PLEASE READ!!!!
Most physicians and therapists who are involved in treating EDS and HSD’s have come upon the topic in the course of their daily practice. There are no specialty programs to train them, there only a small number of continuing medical education (CME) classes in EDS as the primary condition.
There ARE courses in our co-conditions, and in some cases physicians have banded together collegiately to help educate each other. Therefore please use any resources from this page with the following disclaimer:
These are patient recommendations, not referrals, and do not claim any particular physician to be an expert in the treatment of EDS in their field unless they have specifically claimed it themselves (stated in the short description of the physician). Rachel Lee PAC, LLC is not a medical physician, and is not responsible for the way the office staff or physicians in a clinic treat their patients. Furthermore, it makes no claims in these documents which are intended to guarantee a specific type of treatment. These recommendations are made public for the purpose of supporting patients who are self-advocating for care and we do our best to support patient education and self-advocacy skills so that their approach to each physician is respectful and accurately represents the purpose of these recommendations.
North & South Carolina
We are doing a thorough annual update of our local provider list. Please check back for the updated copy. Thank you for your patience.
Have you read A Cultural Approach to Long Term Health? See our handout for a few common tips and lifestyle supports that can make a World of difference.
Disclaimer: This resource database is designed based on multiple recommendations of various physicians and practitioners by multiple patients and, in many cases, other physicians who treat EDS. It is not comprehensive since many doctors may SAY that they are familiar with EDS but in reality have very little awareness or experience, and some physicians will not reject an HSD/EDS patient but are not experts and do not want to be considered as such. We have done our best to seek the approval of these providers before listing them.
This list is updated quarterly. Please email me at office@rachelleepac.com if you would like to
1. Suggest a new addition to this list,
2. Have an important review of one of these providers,
3. Are a physician wanting to be included in this list, or
4. Be removed from it.
Thank you!
Other States
South Carolina – international
Zebra Enthusiast – Dr. Eli Penn, Gastroenterologist and EDS patient
Dr. Penn has had health complications and is currently not seeing patients. Please see our GI resource page for more information on understanding and advocating for healthcare with these conditions.
Online evaluations for out of state and international EDS patients. As a patient himself, Dr. Penn has a creative and insightful approach to all EDS patients. He is well versed in co-conditions and their impact on the GI system, and is passionate about helping EDS patients save time and energy on lengthy GI testing that often does not reveal the problem. Read about low-histamine diet!
Wisconson – and surrounding states
Blog, online interviews with world specialists, and online appointments (when available) for an interdisciplinary approach to diagnoses, treatment and referrals to specialists.
As our community advocacy efforts grow we hope to provide physician recommendations for other regions. Please support our efforts by emailing detailed physician reviews in your region to office@rachelleepac.com.
National & International
For national and international providers in numerous countries, please visit the Ehlers-Danlos Society Provider Database.