This section is dedicated to Ehler-Danlos Syndrome support systems. Medical and FDA Disclaimers Below.
Contents:
Facebook Groups
Websites
Facebook Groups
A Note About FB: Some pages will be:
“Public”= anybody can see them.
“Private”= you can “request” to become a member. Only other members can see what’s posted.
“Secret” =you need a “friend” to “invite” you to the group. Only other members can see what’s posted.
ALSO, try searching your symptoms on FB as well. (For example, there are groups concerning acid reflux and / or gerd.)
Support Group Disclaimer: Common Sense dictates that the following is now added: Please exercise caution when meeting new support groups. While we DO recommend finding LOCAL support groups for their vast knowledge of area-based wisdom (i.e. info on local doctors, therapist and such), we don’t want anybody meeting total strangers until they have done research on the group. Meet in public places. Take a friend. Safety First!
Please start with an area group! Search EDS and/or Ehler-Danlos combined with your area. If nothing comes up, try your closest large town or city. WE SUGGEST this because they may have an active “Physicians List” for you. They would be EDS savvy doctors of various backgrounds in the area.
Example:
Virginia EDS/Chiari/Syringo/TC/IIH/POTS Support Group
(and yes, they keep a running physicians list under their about section.)
Facebook Groups:
Ehler-Danlos Syndrome
EDS Zebras Need Zebras
Fighting EDS with happiness
EDS Support for Applying for Disability
EDS Support for Women
EDS Today
Ehler-Danlos Syndrome Worldwide
EDS Looking for Friends
Inspiring Zebras
Websites
Note: These are going to be BOTH websites, as well as Facebook pages you can “like” usually. “Liked” pages will show up on your Facebook feed as they update.
EDS.com
EDS.com
Ehlers Dandlos.com:
https://ehlers-danlos.com/what-is-eds/
Crisis Awareness
Because depression can be such a big problem with this condition, we’ve added the following. Gentle Hugs to all of you!
National Suicide Prevention Lifeline at 1-800-273-TALK (8255)
or contact the Crisis Text Line by texting TALK to 741-741.
Suicide Prevention Website:
https://suicidepreventionlifeline.org/
More information on researching and purchasing the products within this website:
About- Tips on Purchasing Your Items
Medical and FDA Disclaimers:
Medical Disclaimer:
Common Sense dictates that the following is now added: Please note that recommended reading and its practicum, product information, physical therapies, and any and all advice presented in this collection is intended for the convenience of the reader. For advice on medical issues you should always consult your local medical practitioner.
FDA Disclaimer:
The products and their practicum shown on this website or discussed in our communications have not been evaluated by the US Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease. Those seeking treatment for a specific disease should consult a qualified physician.