Archive for the ‘Caregivers’ Category

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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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Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available

Posted on June 7, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD   Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]

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My Wife Had EDS and Did Not Know IT! – 8th Year Anniversary

Posted on April 21, 2016

  This website and its free programs are dedicated to the memory of Carol and thousands like her – who suffer from undiagnosed Ehlers-Danlos…  We were married for 41 years.  You’d think that after all of that time you would know everything there was to know about a person. –          I knew Carol was a […]

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More Summer Camps for Children with Ehlers-Danlos Syndrome

Posted on February 24, 2016

The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall.  Children with Ehler’s Danlos and their families will be eligible for this session.  In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that […]

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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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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Posted on August 10, 2015

This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,802 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,310

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