Archive for the ‘Family’ Category

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EDS Awareness 5K hosted by Dayton Zebras

Posted on May 5, 2017

– DATE AND TIME Sun, July 9, 2017 9:30 AM – 1:30 PM EDT Add to Calendar – – – LOCATION Eastwood MetroPark Lake Entrance 1401 Harshman Road Dayton, OH 45431 View Map CLICK HERE TO REGISTER 5K Registration begins at 9:30 am 5K begins at 10:30 Bake Sale Craft Sale Auctions Face Painting Meet […]

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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… EDSawareness.com 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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What I Now Understand About My Mom’s Ehlers-Danlos Syndrome

Posted on November 11, 2016

Alexandra is the leader of the Morristown NJ EDS Support group. I was diagnosed with Ehlers-Danlos syndrome after an eminent radiologist in the UK, Professor Smith, saw bulging discs all down my mid-spine, which is very rare, herniated and bulging discs in my neck and signs of ligamentous laxity at the craniocervical junction. Back in […]

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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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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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The Reality of Ehlers-Danlos Syndrome

Posted on December 1, 2015

After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]

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Canada’s Treatment of Ehlers-Danlos Syndrome Calls for Change

Posted on November 2, 2015

Canadians with Ehlers-Danlos Syndrome are desperate for treatment and continue to advocate change in their health care system. MPP Michael Harris is calling for an all-party committee to form a comprehensive strategy on rare diseases. Patients like the Smith siblings are skeptical, but remain hopeful and thankful for community fundraising. By Darcy Cheek, Recorder and Times.   You won’t find […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
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