Archive for the ‘Community’ Category

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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Craniosacral Therapy and Ehler-Danlos Syndrome

Posted on December 2, 2016

By: Eloise Stager, BA, LMT, CST   Introduction Ehlers-Danlos Syndrome (EDS) is a genetic, connective tissue disorder affecting collagen production. Since collagen is found throughout the body, all systems, structures and biomechanics can be affected. The most noticeable physical manifestation is joint hypermobility as described by the Beighton Criteria (6), a scoring system for joint hyperflexion […]

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The Hidden Struggles of Living with Ehlers-Danlos Syndrome

Posted on November 21, 2016

Katelyn Verstraten, Online Reporter.   Ehlers-Danlos Syndrome is just one of many invisible illnesses that dramatically alter the course of the patient’s life. At 18, Catherine Richardson’s life was all planned out: she was getting amazing grades in her first semester of university, pursuing her dream of being an occupational therapist, and working part-time as […]

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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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“Grey’s Anatomy” Ehlers-Danlos Episode

Posted on October 24, 2016

BY Kaytlyn Leslie of the Tribune News. Watch this video about the EDS patient who inspired the Ehlers-Danlos portrayal in the Oct. 13 episode of the TV show “Grey’s Anatomy”. Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. […]

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EDS, POTS and MCAS Linked by One Gene Mutation

Posted on October 17, 2016

Author: Kate Horowitz On a good day, my shoulders, knees, and hips will dislocate two to five times apiece. The slightest bump into a table or door will bloom new bruises on my arms and legs or tear a gash in the thin skin on my hands. My blood pressure will plummet each time I stand, […]

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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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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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