Archive for the ‘Community’ Category
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 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 4, 2016
By Richard Salit, Journal Staff Writer. Ellen Lenox Smith’s recurring injuries and ailments were as baffling as they were disabling. Some doctors thought they might even be psychological. Why was she always in such pain? Why did she have difficulty swallowing? Why did she keep tearing cartilage and ligaments in her knees and shoulders? And […]
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 […]
Posted on June 11, 2016
By Michael D. Pitman Staff Writer Elizabeth Schulze worked for years to be able to garner the strength and stamina to walk across the stage and receive her high school diploma. While the act is easy for most high school seniors, it was not for Schulze. Amy Schulze said her daughter, who plans to attend […]
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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