Author Archive
Posted on August 29, 2016
Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: Results of the EDS Awareness World-Wide Survey PRESENTERS: John Ferman and Deanna Hamm John Ferman and Deanna Hamm (father and daughter) are co-founders of the EDS Awareness Program. There were 2544 respondents to this World-Wide survey from 26 countries. The specific results were presented and discussed during […]
Posted on August 13, 2016
Staff writer Gwendolyn Craig Thank you to all who participated in, volunteered at and donated to the Ehlers-Danlos Hoofbeat Run Walk-N-Roll on August 6th. KING FERRY — Elizabeth Shaw loves to swim, bike and practice CrossFit. She has cycled around every Finger Lake, and for about three years, she has been a local personal trainer, helping […]
Posted on August 12, 2016
BY: THOMAS HEATON AND DAVID MAIDA . . . . The syndrome causes abnormal collagen synthesis, which means that although the body produces it, the collagen is weaker and causes the joints and its connective tissue to become loose. Auckland-based Dr Fraser Burling, an expert in chronic soft tissue injuries, said […]
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 […]
Posted on July 25, 2016
by Beatrice Credi “I would love to have seen the joy in your heart and have seen the hope of the first time in your eyes.” These sweet words were written by Benjamin Arasl, an adolescent in France who, through his song, tells the story of the love that he hoped to be able to […]
Posted on July 18, 2016
The Ehlers-Danlos Society hosted the #ZebraStrong, a rally in Baltimore’s Inner Harbor on Saturday, July 16, 2016 to build awareness for Ehlers-Danlos syndrome, an often painful and disabling, yet highly under-diagnosed and misdiagnosed genetic disorder. The rally was held immediately following the Society’s Global Learning Conference which was held at the Hilton Baltimore July 14-16. Over 500 attendees […]
Posted on July 17, 2016
By PATRICK SKERRETT @PJSkerrett
As the nation begins responding to the epidemic of overdoses and deaths caused by opioids, some people with chronic pain who have relied on these powerful painkillers for years are finding them harder to get. A survey conducted by the Boston Globe and Inspire, a health care
Posted on July 15, 2016
Email Alix at aredmonde@mysuncoast.com SARASOTA, Fla. – A serious diagnosis of a rare disorder is challenging enough for the hardiest adult, but one young woman with Ehlers-Danlos syndrome (EDS) is stepping up to raise awareness, and be her own health advocate. Ehlers-Danlos syndrome is a genetic mutation of the connective tissue that causes […]
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