Archive for the ‘Support Group Activities’ Category

Presentation & Round Table Discussion with children with EDS

Posted on September 21, 2016

Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]

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May is Ehlers-Danlos Syndrome Awareness Month

Posted on April 4, 2016

This month is Ehlers-Danlos syndrome awareness month. It’s a connective tissue disorder with no cure. Dr. Rob is “in the house” to give us details on how we can help those suffering from this often-painful condition. Andrea Julian, a leader of the Dayton Ohio EDS Support Group is interviewed. Click here for the Dayton, Ohio EDS […]

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EDS & Chiari “Unite@Night” Walks in Ohio

Posted on May 31, 2015

The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!

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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

Posted on April 25, 2015

Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]

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Ehlers Danlos Syndrome Support Group is starting in Rochdale, UK

Posted on October 7, 2014

 Rachel Hastie is forming an EDS Support Group for her daughters and to help raise EDS Awareness. Her youngest daughter, Ellicia Grace, is showing signs of Vascular EDS. By Amy Westlake. “A support group to help those with Ehlers Danlos Syndrome (EDS) has been set up in Rochdale by former Smithy Bridge resident, Rachel Hastie […]

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CSU Spoonies Help Students with Ehlers Danlos Syndrome

Posted on September 25, 2014

Students with chronic health conditions can get support from the Colorado State University “Spoonies” and the CSU Chronic Health Mentoring Program. We applaud these programs and hope they can serve as a model for other universities.  by Amanda Thompson. “Imagine a typical weekday for a college student. They go to classes, study, hang out with friends and participate in other leisurely activities. […]

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“For the last 10 years I was told it was all in my Head” – It was EDS!

Posted on April 20, 2014

Many of those with Ehlers-Danlos are having a difficult time getting diagnosed. RARE DISEASE SUFFERERS say it is like banging their heads “against a brick wall” trying to get specialist treatment in Ireland – and that some doctors have thought they were making their symptoms up. Ehlers Danlos Syndrome spoke to three women who […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

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