Archive for the ‘Kids’ Category

Telling My Teammates “I Have Ehlers-Danlos Syndrome”

Posted on February 25, 2017

By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]

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Ian’s story: 4 Year Old Living with Ehlers-Danlos Syndrome

Posted on January 29, 2017

    Our free EDS Awareness program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… offers FREE Educational Sessions twice/month! To receive webinar announcements via email, Click Here To watch video RECORDINGS of previous presentations, Click Here  

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Family Struggles With Ehlers-Danlos Syndrome

Posted on October 14, 2016

By Mary Thomsen Courtesy of the Valders Journal The full calendar in the Schmitz kitchen does not quite paint the picture of a typical month for an active family, but every appointment helps the family get on with life. “My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, […]

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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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Ian’s Story: A 4-Year-Old Living with EDS

Posted on July 27, 2016

By Taylor Barth   LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise […]

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Ten year old EDSer wins at swimming

Posted on June 29, 2016

By Ken Barhorst. Ten-year-old Jarrett Payne of Sidney has so far had an amazing career in swimming. And it’s been against all odds. The son of Jeff and Wendy Payne, Jarrett was diagnosed at a very young age with Ehlers-Danlos Syndrome. As explained in medical terms, Ehlers-Danlos Syndrome is a group of inherited disorders that […]

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Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.

Posted on April 10, 2016

Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.    Start Date: May 1, 2016 at 12:00 am End Date: May 31, 2016 at 11:59 pm Rules: Attached you will find a picture of a zebra bust that was designed and drawn by the artist Katie Zamudio, Doodlebug Coloring Books. Starting May 1, 2016 at 12:00 am […]

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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)

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