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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Available now to print through Vistaprint! This new EDS brochure is designed for general awareness of EDS. It’s suitable for doctors, teachers, and relatives who just don’t “get it”.
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 loving […]
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Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”