Archive for the ‘Parenting’ Category

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Watch Ehlers-Danlos episode on “Good Morning America” – Video Link

Posted on November 29, 2013

“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to  Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse.  Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story  about the Huber family’s false allegations […]

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EDS Awareness Speaker Series – Alberto Friedmann – Recording

Posted on November 5, 2013

  We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]

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Discovery Health Channel: Ehlers-Danlos Syndrome

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.

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It was Life Changing for Theresa to Find Out About Her Ehlers-Danlos

Posted on October 11, 2013

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 […]

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Joanne Has Rare and Life-limiting Condition: Vascular Ehlers-Danlos

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 […]

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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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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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