Archive for the ‘Family’ Category
Posted on November 1, 2013
Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face. It addresses EDS Hypermobility and Vascular types.
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
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 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 […]
Posted on September 17, 2013
Ehlers-Danlos Syndrome patients may be sensitive to bruising due to fragile capillaries and blood vessels surrounding the connective tissues. This story tells more about this symptom. by Pavitra Sampath “Mysterious bruises have been appearing on my legs for a while now, mostly on my thighs, but also on my calves. Sometimes they appear and I can […]
Posted on June 6, 2013
Many EDS patients are struggling to get their doctors to understand their condition. This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]
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