Archives

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 […]
View page


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 […]
View page


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 […]
View page


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 […]
View page


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 […]
View page


James Doss

James Doss of Mobile, Alabama was diagnosed with Vascular EDS in 2011 when his femoral artery ruptured. Multiple doctors put their heads together and placed artificial arteries and he survived this major surgery. He lived life to the fullest, making people laugh, became an EMT to help others, animal lover, loved music, he would go […]
View page