Though I am no medical expert in any way, shape, or form, here are some sites, support groups, articles, and so on that helped me to learn a little more about Ehlers-Danlos Syndrome and how to best take care of myself. I’ll keep adding to this list over time.
Please, be sure to do lots of research before deciding if you think you have Ehlers-Danlos Syndrome (EDS) or a Hypermobility Spectrum Disorder (HSD)—find a medical professional you trust when seeking a diagnosis and advocating for yourself. Do not take medication before getting an official diagnosis or approval from a prescribing medical professional.
Ehlers-Danlos Syndrome Resources and Support Groups
Ehlers-Danlos Syndrome Facebook Groups
- Ehlers-Danlos Support Group
- Ehlers Danlos Support In Your 20’s And 30’s
- EDS – Zebras need Zebras
- EDS Life Hacks
- Ehlers-Danlos Worldwide
- Elhers-Danlos friends, family, and partners support group
- EDS – Laughing Zebras
- Ehlers-Danlos ILLUSTRATED Support Worldwide EDS/POTS/MCAD/Chiari
- Ehlers-Danlos Syndrome (EDS) Medical Scientific Articles
Ehlers-Danlos Syndrome Helpful Blog Posts
- From The Mighty: “30 Unexpected Coping Techniques That Help People Manage Ehlers-Danlos Syndrome”
- From The Mighty: “32 Hacks That Can Make Life With Ehlers-Danlos Syndrome Easier”
- From The Mighty: “Why I Started a ‘Pain Diary’ (and Why I Think You Should, Too)”
- From The Mighty: “Gentle Exercises You Can Do During a Flare or With Significant Chronic Pain”
- From The Mighty: “DEI Releases Its List of Best Companies to Work for If You Have a Disability”
- Knowing Your Rights: Parking with a Disability Placard as a Staff Member
- From the Mighty: “18 Messages of Hope from People with Disabilities Who’ve Struggled with Suicidal Thoughts”
- Zebra/Spoonie Product Review: Colored Pencils for the Artist with Chronic Hand-Pain!
- From The Mighty: “The Difference Between Brain Fog and Forgetfulness”