Baroness Nicola Blackwood releases video for EDS/HSD Awareness Month
“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.
Sophie Hulme will close her acclaimed fashion label in December, citing EDS-related health challenges
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.
Next round of recruitment events announced for the HEDGE research study
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.
Pua Na Pua Art Festival puts the spotlight on artist with EDS on Hawaii Island
“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.”