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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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MORE THAN HYPERMOBILE: EHLERS-DANLOS AND ITS RARER FORMS

MAY 16, 2018 While every zebra has a unique set of stripes—and every person living with Ehlers-Danlos has a unique set of symptoms—joint hypermobility, a characteristic most often associated with hypermobile Ehlers-Danlos syndrome (hEDS), the most common type of EDS, is part of almost every diagnosis. Yet, hEDS is only one of the 13 different […]
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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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EDS GROUPS PLAN AWARENESS EVENTS ACROSS THE WORLD

From Arizona to Amsterdam, Ehlers-Danlos organizations and individuals from across the globe have planned public events from bake sales and photo shoots, to parade floats and awareness walks for Ehlers-Danlos Awareness Month this May. Local groups and individuals play an integral part in raising awareness for the Ehlers-Danlos syndromes by taking the message to their […]
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