Archive for the ‘Awareness’ Category
Posted on September 29, 2013
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 […]
Posted on September 28, 2013
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 […]
Posted on September 28, 2013
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 […]
Posted on September 26, 2013
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 […]
Posted on September 26, 2013
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 […]
Posted on September 24, 2013
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 […]
Posted on September 21, 2013
There are few doctors in Canada treating children with Ehlers-Danlos Syndrome. Unfortunately there is now one less! By: jfrketich@thespec.com “A Hamilton neurologist who was one of the only doctors in Canada to treat children with Ehlers-Danlos syndrome has gone to the United States. Dr. Benedicto (Ben) Baronia’s last shift was Sept. 15 at McMaster Children’s Hospital, […]
Posted on September 20, 2013
An eight-year-old EDS boy’s dream of driving a Lamborghini has come true thanks to the Starlight Children’s Foundation. “Cameron Jones suffers from a complex form of the genetic disorder called Ehlers Danlos Syndrome, where collagen fails to form properly in the body that affects the skin, ligaments, and internal organs. Despite spending a lot of time in […]
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