Ehlers-Danlos in the News

Yesterday the artist Sia tweeted about having Ehlers-Danlos syndrome and sent out a heartfelt message to others suffering pain to let them know they are not alone. We are sorry
“Ehlers-Danlos syndrome is a rare genetic condition that is often misunderstood and can be difficult to diagnose. I remained undiagnosed for more than 30 years,” stated Baroness Nicola Blackwood in a recent video from the UK’s Department of Health and Social Care.
The Sophie Hulme company is donating 10% of the proceeds, from all of its sales until it closes in December, to charities that support people living with Sophie’s conditions. The charities are The Ehlers-Danlos Society and Kleine Levin Syndrome Support.
The Ehlers-Danlos Society is excited to announce our next two participant recruitment events for the landmark Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) research study; June 1st-2nd in London, and June 15th-16th in Baltimore.
“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
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
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.