Archive for the ‘Parenting’ Category

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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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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Cerasani is Getting Help From the ILC Foundation in Canada

Posted on August 30, 2013

Cerasani has Ehlers-Danlos syndrome and is getting financial help from the  ILC Foundation in Canada. ByDavid Lea “Organizers of a fundraising event intended to help an Oakville woman living in chronic pain said they need the public’s help more than ever after thieves stole the money they had raised so far for her treatment. The […]

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