Archive for the ‘Community’ Category

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Ehlers-Danlos Syndromes – Structurally Unsound

Posted on August 7, 2017

Hypermobile EDS is difficult to diagnose because it devastates the whole body and causes numerous symptoms. By Mary Vuong Sarrah Hannon once led an active life of triathlons, marathons and rock climbing. Now she refrains from lifting a gallon of milk. Hannon, 30, lives with Ehlers-Danlos Syndrome (EDS), a group of genetic connective tissue disorders. The […]

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Causes, Signs, Diagnosis, and Treatment for Ehlers-Danlos Syndromes

Posted on July 5, 2017

By Catherine Roberts You likely haven’t given too much thought to your skin, joints, and blood vessels lately—unless you’ve suffered an wound that required stitches or a joint injury that put you off your game for a few weeks. However, for patients with Ehlers-Danlos syndromes, a set of inherited disorders that strike these connective tissues, […]

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Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

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Radio Broadcast – Woodman Tower Lights Up for May EDS Awareness Month

Posted on May 28, 2017

    By MICHAEL LYON • MAY 15, 2017 The Woodmen Tower  in Omaha, NE, was lit up in black and white “zebra” stripes Monday night, 5/15 for Ehlers-Danlos Syndrome (EDS) Awareness Month, which takes place in May.     This iheart radio show in Omaha, NE  featured Wendy Hamilton, Colleen McCoy, leaders if the Nebraska […]

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2017 EDS Learning Conference Registration is Open

Posted on May 26, 2017

  The Ehlers-Danlos Society has scheduled the 2017 Ehlers-Danlos Society Global Learning Conference, September 7th-9th, Bally’s Hotel in Las Vegas. Registration details, including prices, are on the link below. Click here for registration information. We will be a conference sponsor again for the 6th year.   Please visit with us at our EDS Awareness booth. Contact […]

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What Does this Logo Mean?

Posted on May 4, 2017

Have you ever looked at logos and considered that they may have a hidden meaning or inspiration behind their creation? Our favorite brands may hold hidden messages behind the fancy artwork. To uncover the meaning embedded in the EDS Awareness logo, we asked John Ferman, the co-founder of EDS Awareness (Chronic Pain Partners). Introduction John […]

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Kristin Means Discusses Her Journey with EDS

Posted on May 4, 2017

Many Ehlers-Danlos Syndromes (EDS) experts believe that its prevelance is higher than once thought. Estimates range from 1 in 500 to 1 in 100.   Dr. Fraser C. Henderson, Sr., MD, comments in this video that “1 in 10 Americans have hypermobility connective tissue disorders. That’s 30 million people – and we don’t know exactly […]

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Current Poll

How long until you received a proper diagnosis for EDS?

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