Archive for the ‘Community’ Category

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Safety Tips for EDS Patients Going to the ER

Posted on December 15, 2017

December 13, 2017 By Ellen Lenox Smith, Columnist Ellen Smith is a member of the Rhode Island EDS Support Group and very active as an advocate and speaker. People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to a hospital emergency room, due to a lack of understanding in the ER staff on […]

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Activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8

Posted on September 11, 2017

We participated again in a very successful EDS Learning Conference. Here are connections to activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8             New EDS Physician CME Educational Online Program announced   Click here for Jon Rodis EDS Society Conference Summary Click here for Dr. Chopra’s presentation […]

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EDS Society Global Conference Summary – Jon Rodis

Posted on September 10, 2017

Jonathan Rodis Founder and Co-leader-Ehlers-Danlos New England/Massachusetts Support Group President-Massachusetts Chapter of The Marfan Foundation Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s) National Disability and Medical Advocate for Rare Disorders Member: Winthrop Disability Commission EDS Society Global Learning Conference in Las Vegas Recap   As I promised, here is my recap of the EDS […]

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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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