Community
It was Life Changing for Theresa to Find Out About Her Ehlers-Danlos
Three weeks ago Theresa was finally diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that affects her joints. She finally found a name for the pain! HANOVER — Several months ago, Theresa Selfe decided to take a walk, not realizing how much she would regret it. She sat down for a while after returning home and when […]
Doctor Speaker Series: Dr. Diana Driscoll
EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. The sessions will be the 1st and 3rd Wednesdays of each month at 9:00 pm EST. Please note: We are limited in the number of openings so please log-in early to attend the program. We will provide a link to click on to join the meeting, […]
“Bethalon Ironman” Raises Funds for Beth’s Ehlers-Danlos Needs
Some staff members of Saundersfoot Community School are running, swimming and cycling to raise money for an orthopaedic bed for Beth who has Ehlers-Danlos Syndrome “October will be a busier than usual month for some staff members of Saundersfoot Community School. Inspired by the recent Ironman event, a number of ladies at the school will be […]
Joanne Has Rare and Life-limiting Condition: Vascular Ehlers-Danlos
Joanne gets alot of support from her friends and family while struggling with Vascular Ehlers-Danlos. “Joanne Teague was an apparently healthy mother of three young children when she had a heart attack at home one evening. The 39-year-old occupational therapist had just put children Pete, then two, Alice, three and Will, seven, to bed and […]
Mother and Daughter with Vascular Ehlers-Danos Syndrome
What a beautiful story of mom and daughter as they help one another deal with vascular Ehlers-Danos syndrome (EDS) by Jamie Bullen jbullen@thekmgroup.co.uk “A young mum has told of her heartbreak after she and her only child were diagnosed with an incurable disease which will cut short their lives. Leanne Bell, 26, and five-year-old Alicia discovered on the […]
Petition in Ireland: Ehlers-Danlos “Treatment Abroad Scheme”
Hello, my name is Jordan Egan, I’m 16 years old and I live in Ireland. I have Ehlers Danlos Syndrome and other associated conditions, Irish EDS patients have no access doctors that are familiar with the condition in Ireland and because of this many people have to travel to London for treatment. The Irish health […]
Pokemon is Favorite Game for Cameron Who has Ehlers-Danlos Syndrome
Pokemon is Cameron’s way to show the world how proficient he is with card games. “A mother who set up Dunstable’s first Pokemon club so her poorly son could play his favourite game is handing over the reigns after five years. In that time, 14-year-old Cameron Dilley – who has chronic fatigue due to Ehlers-Danlos […]
Annabelle Has Life-Threatening Vascular Ehlers-Danlos Syndrome (VEDS)
Sixteen-year-old Hannah Alderson is helping to raise funds for Annabelle while promoting EDS Awareness in the UK “A KIND-HEARTED teenager has completed a 10k run with her mum to raise money for a Bury youngster with an incurable and life-threatening condition. Four-year-old Annabelle Griffin, of Wilby Close, Brandlesholme, suffers from life-threatening Vascular Ehlers-Danlos Syndrome (VEDS) which means […]
