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Stay Strong - Stay Connected for Ehlers-Danlos Syndrome (EDS) 2013
EDSers United has launched the Stay Strong - Stay Connected for Ehlers-Danlos Syndrome (EDS) Awareness Campaign for the entire year of 2013. The success of this project is dependent on volunteers and donations. Donations fund the cost of printing and distributing EDS Awareness Materials throughout
Share Your EDS Story
Every EDSer has a story. From getting diagnosed, to searching for physicians that are willing to take on our "rare" medical cases, to learning how to live with a chronic condition, every single EDSer has experienced a unique journey full of hope, disappointments, laughs, discouragements, and
May is EDS Awareness Month!
Let’s utilize the month of May as EDS Awareness Month and join forces for a great cause! EDSers United is prepared to provide any EDS Awareness Effort, wherever the event is occurring, with discounted EDSers United T-shirts, free information pamphlets, and …
Why is this campaign important to you?
Of 16-18 doctors, apart from my diagnosing Geneticist, only one was familiar with EDS. A few had heard of it in med school. So, I explain introduce it/educate the physician, then pay royally for the medical visit. The bottom line: EDS is so rare, it's not even being researched. AWARENESS!
ML, great information! Please check my message when ya can.
I have a daughter with EDS too and friends with maxine x
Thanks Rachel xxx :)
My daughter was diagnsoed w/EDS 3 when she was about 11 yrs. old. She is now 23, underwent her 17th surgery this past summer. She is an inspiration and has touched many!
The chronic & debilitating pain, anxiety & dysautonomia conditions affect all aspects of my life, & because it is an invisible illness it is difficult for others (including doctors) to understand.
This cause is important to me because EDS has affected me and several other family members...recent diagnosis explains a lifetime of medical issues...finally all of the puzzle pieces are in place! Now the important thing is to educate ourselves and others about this rare chronic disease!
my 11 year old son and I both have Vascular Ehlers Danlos Syndrome.