As I work with my clients, I gather a list of resources that are helpful. In no particular order, here are some of my favorites. If I mention a resource to you that is not listed here or if you find something new, give me a nudge. I’ll be happy to add it.
Dr. Rudin is an excellent (and very friendly) doctor who has expert knowledge of Ehlers-Danlos Syndrome (EDS). He works at the UW Health system. Several of my clients have seen him and he has been helpful with getting a diagnosis.
Tiffany Houdek is a PT at UW Health who also works with EDS patients. She has been very helpful to some of my clients with chronic pain and stressed psoas muscles.
Jaime Irving is an acupuncturist. Among her many skills, she specializes in working with hypermobile people. She helps you manage your health, pain, and general physical function. Ask her for a maintenance regime. She has many recommendations to keep you moving without pain.
EDS Wisconsin provides support and resources to those affected by EDS. I can’t say enough good things about this group. They have support groups, information, fundraisers… They do really good work to help spread the word about EDS is and how it affects people. If you want to follow the latest EDS research, sign up for their Facebook page. Their feed is excellent.
Never Bet Against Occam
Never Bet Against Occam is about Dr. Afrin’s journey to understand Mast Cell Activation Syndrome (MCAS) and how prevalent it is in his patients. MCAS is an immune system disorder that creates many seemingly unrelated symptoms. If you always feel lousy and people treat you like you’re making it up, this book is for you. Even if you don’t have MCAS, it’s helpful to read how one condition can be the underlying cause of so many different complaints. This book is in the Madison Library system.
Ehlers-Danlos Syndromes Physician Education (Videos)
The Ehlers-Danlos Syndromes Physician Education website is a source for CME credits about EDS. If you want to learn more about EDS, I recommend watching the videos on this site. You don’t need to register to watch them–just click on “Modules” in the navigation bar. The videos are a little “medical-y” (slightly dry and technical) but they give a great overview of EDS. This is a good place to start.
The Ehlers-Danlos Society
The Ehlers-Danlos Society is an international EDS support organization. Check out their community resources section for printed materials and webinars about EDS.
Chronic Pain Partners
Chronic Pain Partners is another EDS support website. There are support groups, helpful articles, and webinars.