Archive for the ‘Community’ Category

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Mother and Daughter with Vascular Ehlers-Danos Syndrome

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 […]

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Petition in Ireland: Ehlers-Danlos “Treatment Abroad Scheme”

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 […]

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Pokemon is Favorite Game for Cameron Who has Ehlers-Danlos Syndrome

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 […]

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Annabelle Has Life-Threatening Vascular Ehlers-Danlos Syndrome (VEDS)

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 […]

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Canadian Ehlers-Danlos Doctor moves to the US

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, […]

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Starlight Foundation Grants Wish For EDS Boy

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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Doctor Speaker Series

Posted on September 18, 2013

EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]

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Doctor Speaker Series: Dr. Stephane Treyvaud

Posted on September 18, 2013

  We were pleased to have Dr. Stéphane Treyvaud present in our EDS Doctor Speaker Series. His presentation aired on September 18, 2013 at 9:00 pm EST.     Dr. Treyvaud is an adult, and child and adolescent psychiatrist. He is a fellow of the Royal College of Physicians and Surgeons of Canada, of the equivalent college […]

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