Ehlers-Danlos in the News

Originally posted on Yahoo! Lifestyle on 27 Aug 2018 Vanessa Wallace failed to hold back the tears in Berlin after a tough season ended with her greatest reward and World Para Athletics European Championship gold. The Londoner threw a season’s best 7.45 metres to storm to the F34 shot put title and cast away memories […]
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 […]
By Sandee LaMotte, CNN, June 26, 2018 Super Bowl MVP Nick Foles is ecstatic about leading the Philadelphia Eagles to victory, but that’s not the triumph he celebrates daily. He gives that medal to his wife, Tori Foles, for what he calls her “amazing strength” in fighting a little-known disorder called postural orthostatic tachycardia syndrome, […]
by Matt Smith Since being diagnosed back in 2013 with vascular Ehlers-Danlos syndrome, there has been a constant internal conflict of whether or not being diagnosed with a life-threatening, rare, genetic, incurable condition, is a good thing or a bad thing. The fear and anxiety caused by the knowledge that you have this condition that […]
Watch Marinda Davis the CW’s “My Last Days” as she explores her vascular Ehlers-Danlos syndrome diagnosis. Marinda, a professional choreographer who has been featured on Dancing with the Stars, describes her medical journey in this docu-series hosted by Justin Baldoni. The episode follows Marinda and her dancers throughout the production of her show “UNbreakable”, which […]
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 […]
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 […]
By Shani Weber. Originally posted by Mayo Clinic on May 18, 2018. Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher. My self-identity was being a teacher and my purpose was teaching. My life was going as planned—until it wasn’t. Joint pain and dislocations became […]
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 […]
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 […]