EDS awareness

Share information and find out what you can do to raise awareness of EDS.


Too much for friends?

  • By Mander9888 · New reply yesterday at 12:39 pm
  • 5 replies
  • Just recently my best friend broke up with me. I say it this way because we weren't just friends... We were sisters, bosom buddies, absolutely connected. My daughter looked to her as a second mother ...

EDS and Mental Health

  • By ChooseCourage · Posted April 13, 2014
  • 0 replies
  • I have EDS, and I'm currently getting a Master's in Mental Health Counseling so this post really caught my attention. My mother, who also had EDS and suffered a terrible childhood as I did, suffered from ...

Zebra Wine Glasses at the Dollar Tree

  • By anemiapotsmom · New reply April 13, 2014
  • 2 replies
  • Just wanted to let everyone know that the Dollar Tree on Custer and 121 in McKinney has really cute zebra-design wine glasses. I assume all Dollar Trees have them ...


  • By smellofsmoke · New reply April 12, 2014
  • 6 replies
  • Good morning all, I like to think of myself as a dispassionate contributor and a non-capslock-utilizing citizen of the internet, but this is worth all the capslock I can throw this morning. I got a call ...

EDS Awareness opportunity coming up

  • By hockeymom247 · Posted April 11, 2014
  • 0 replies
  • I'm pleased to announce that there's an awareness opportunity coming up in the month of August in Westerville, Ohio. The Columbus Ohio Support Group has been given the privilege of promoting awareness ...

Dystonia and E.D.S

  • By Pollytunnel · New reply March 30, 2014
  • 7 replies
  • Anyone know where the research into the link is going ...

EDS Awareness Speaker Series — March 19, 2014 (TOMORROW)

  • By ladybugsew · Posted March 18, 2014
  • 0 replies
  • WHAT: “EDS Doctor Speaker Series” – a webinar program hosted by EDSawareness.com WHEN: Wednesday, March 19, 2014 at 7:30 – 9:00 PM Eastern Time TOPIC: Sacroiliac Joint Dysfunction with People diagnosed ...

Need a Dr. to Diagnose ED

  • By methos · New reply March 18, 2014
  • 1 reply
  • I need a Doctor in western Massachusetts that can diagnose (not treat) ehlers danlos syndrome ...

Support Groups!

  • By pandowla · New reply March 7, 2014
  • 1 reply
  • Hello everyone! I just wanted to let you know that I am the leader of two different support groups. One is in Indianapolis and here is the link to the FB page. Request to join and I will keep you up to ...

Dr. Chopra: Live webinar March 5 @7:30pm EST

  • By Amanda1978 · New reply March 6, 2014
  • 8 replies
  • Hi, just wanted to let everyone know about this (sorry, format isn't great, I just copied and pasted): EDS Doctor Speaker Series EDS Awareness invites you to attend a FREE online learning session! In ...

I want to organize a 5k for EDS awareness... Where do I start?

  • By jessi311 · New reply March 1, 2014
  • 5 replies
  • I would really love to organize a 5k in my community in May for EDS Awareness Month. Has anybody done this before, or does anybody know somebody who has done this before? Where do I even start ...

Show by Support Wearing Zebra Print FRIDAY 2-28!

  • By DJGirlSix · New reply March 1, 2014
  • 12 replies
  • Wear that U Care! National Rare Disease Day: Myself and a family member put together a short video which she had played at school. Our goal for National Rare Disease Day was to have people wear ZEBRA ...

NIH’s annual celebration of Rare Disease Day

  • By Cotntail · New reply February 27, 2014
  • 3 replies
  • This just came in my email. If you are in the Maryland area perhaps you would want to attend. For Immediate Release Thursday, February 27, 2014 Contacts: NCATS Office of Communications info@ncats.nih.gov ...

live chat on rare disorders?

  • By xrmeagain · New reply February 26, 2014
  • 2 replies
  • I just saw this while browsing. I'm not sure if 'today' means today, or if 'today' means the day it took place which may ghave been in January? http://gma.yahoo.com/texas-brothers-diag nosed-rare-deadly-disease-095645514--abc ...

If you could let the world know one thing about EDS...

  • By DedeKay · New reply January 25, 2014
  • 50 replies
  • My daughter is doing a 5th grade project to promote EDS awareness. Can you please answer the following: If you could help the world know/understand one thing about EDS, what would it be ...

News story of Ice Skater raising EDS awareness

  • By CRD65 · New reply January 9, 2014
  • 7 replies
  • I saw this story on the local news tonight. An Olympic hopeful figure skater is raising awareness about EDS, http://www.ksdk.com/story/sports/2014/01 /08/us-figure-skating-championships-soch i-olympics-st-louis-ties/4378879 ...

Quick question.

  • By Kaylalaprincess · New reply December 28, 2013
  • 6 replies
  • Does anyone know why the EDS awareness ribbons are zebra? Like where did the zebra come from ...

What can you do when they just don't get it?

  • By Twibli · New reply December 27, 2013
  • 13 replies
  • How do you handle it when your doctor simply ignores anything you say a our EDS? I need and asked for more than a "psychiatric nurse" for home health care. I spent about five days in the hospital several ...


  • By src1321 · New reply December 21, 2013
  • 33 replies
  • Hello! I am a teacher as well as an EDS patient working on a independent research project. I need help from fellow EDS patients! I have created an anonymous survey that shouldn't take too long! Please ...

If I could let PHYSICIANS know one thing about CTDs

  • By Cotntail · New reply December 19, 2013
  • 1 reply
  • Paraphrasing DedeKay's thread...here is what would like to shout at the medical profession. I've intentionally made this post "public" . From a new article that I can only access the abstract...for now ...

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