Category: Ehlers-Danlos in the News

I cycled 5000 miles round Britain for Ehlers-Danlos

by Natalie Wilson. Originally posted on Metro UK on 22 Aug 2018 I’ve always had Ehlers–Danlos Syndrome, a rare inherited condition that affects connective tissue. But at 19 a blockage in the back of my brain meant my condition deteriorated fast. I went from being a student out partying all the time to not being able
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UK Women Build EDS Awareness

Posted by Uckfield News on June 12, 2018 Lara Bloom has walked the London Marathon, carried the torch for the London 2012 Paralympic Games, and is constantly on the move around the world raising awareness of rare and invisible diseases. If you met her you would have no idea that she lives in constant pain.
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Martinsburg woman raises awareness for Ehlers-Danlos Syndrome

By Tabitha Johnston, originally published May 25, 2018 in The Shepherdstown Chronicle In April, Ashton Nesmith-Kochera, a board-certified patient advocate and Tri-State Ehlers-Danlos Syndrome Support Group leader, lobbied for Governor Jim Justice to proclaim May as EDS Awareness Month. Nesmith-Kochera, who lives in Martinsburg, was excited to receive a certificate with that proclamation signed by
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Born This Way? When Hypermobility Has its Privileges–and Problems

The Ehlers-Danlos Society Seeks to Build Awareness Among Dancers, Gymnasts, and Acrobats For gymnasts, dancers, acrobats, and skaters, natural hypermobility can be a great blessing—until it isn’t—especially for those born with hypermobile Ehlers-Danlos (hEDS) or a hypermobility spectrum disorder (HSD). To help families understand these challenges, The Ehlers-Danlos Society is raising awareness about hypermobility within
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Wear #REDS4VEDS to Support People Living with Vascular Ehlers-Danlos Syndrome

Friday, May 18th is #REDS4VEDS Day around the world. Help us raise global awareness for vascular Ehlers-Danlos syndrome by wearing RED and posting on social media with #REDS4VEDS Day. LIFE-THREATENING Caused by a mutation in collagen type III, a connective tissue protein present in the vascular tissues, Vascular Ehlers-Danlos syndrome (vEDS) is a serious, life-threatening
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Two women come together to raise awareness of rare disease

Originally posted by Uckfield News on May 10, 2018 Two young women who have an incurable and rare disease organised a coffee morning yesterday to raise awareness of Ehlers-Danlos syndromes. Emma Woolley, 41, and Anita Gallemore, 44, met at Temple Grove Care Home at Herons Ghyll and it was the first time either of them
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