Ehlers-Danlos in the News

“Because with EDS, you have a lot of pain, as you can imagine with your body dislocating all the time, it’s kind of painful,” Adare said. “When I paint, it’s the only time I don’t feel pain. So, I paint a lot to kind of offset that.”
Originally posted by WGN9 Chicago on Nov. 2, 2018. By Katharin Czink and Dina Bair It’s often written off as anxiety, particularly in girls. But when the symptoms are thoughtfully pieced together, a puzzling and widely unrecognized disorder is revealed. A quick check of her blood pressure is just one step in Maddie Schubert’s extensive daily […]
by Ngaevarue Katjangua, originally posted 31 Oct 2018 by The Namibian WHILE some people battle with one disease at a time, a person who suffers from the rare Ehlers-Danlos Syndromes has to endure several conditions at the same time. The conditions range from dislocating joints, bruising skin, poor eyesight, fatigue, frequent collapsing and insomnia as […]
Originally published by the University of Surrey on 05 Oct. 2018 University is a time to grow your mind, expand your horizons and develop as an individual. A key part of this experience is learning how to deal with setbacks. For one Surrey alumna, falling ill partway through her studies was the biggest hurdle she’s […]
Advice for navigating—and maybe even changing—institutional bias on your journey through high school and beyond. By Alaina Leary. Originally published in VICE magazine’s Power and Privilege Issue on Oct. 15, 2018. I faced a maze of questions as a high schooler applying to colleges in 2010. What universities were LGBTQ+ friendly, which one had the biggest […]
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, […]
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. […]