Welcome to the Capital Area Ehlers-Danlos Syndrome Support Group

This support group is for people with Ehlers-Danlos Syndrome (EDS) and those whose loved ones have EDS. It is in the Lansing, Michigan (Capital) area. I myself have EDS, which wasn’t diagnosed until two years ago. Many individuals with EDS are unaware they have it. Like me, they may have had years of joint and muscle pain, fatigue, dizziness, and no diagnosis which explains their symptoms. Typical tests come back normal, with the exception of perhaps some degenerative (wear-and-tear) changes as we get older. People with EDS may have gone to numerous doctors to try to find the reason for their pain, and been told they have fibromyalgia, chronic fatigue syndrome, or that the pain and fatigue they are experiencing is all in their heads. When I learned I had EDS (I was finally diagnosed at the MSU Genetics Clinic at age 61), it made sense of problems that had troubled me for decades. Now, I've been working at improving what I can, and I've learned a great deal about EDS, both as a Nurse Practitioner and as a woman with EDS. I really want to share what I've learned, and learn about the experiences of others through this support group. If you have chronic pain, and also hypermobile joints (or a history of "double-jointedness"), it could be EDS. You can find out more about EDS on this website. If you have questions, you can contact me at capitalareaeds@gmail.com. Also, please visit our Facebook page at https://www.facebook.com/edssupportlansing/! I hope you can join us in our group!

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