Archive for the ‘Family’ Category

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Katie – “When I reached 16 I Had Dislocated My Hips about 50 Times from EDS”

Posted on December 1, 2013

Katie Vale has finally discovered some methods to help her manage her Ehlers-Danlos Syndrome symptoms.  By: Lucy Benyon Published: Sun, December 15, 2013 “Katie Vale was diagnosed with Ehlers- Danlos disease which causes regular injuries [PH] Katie, 34, lives in Essex in the UK. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her […]

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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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Ayiana Lives With the Constant Pain That She Endures Each Day

Posted on November 26, 2013

This courageous young lady has a faith in God that helps her manage her pain from Ehlers-Danlos Syndrome. By: Daniel Elizondo Silsbee, TX Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing […]

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TV News Report: Ehlers-Danlos Leads to Bogus Child Abuse Allegations – Watch Videos

Posted on November 17, 2013

All charges were finally dismissed after false child abuse allegations kept Andrew Huber separated from his daughter for nine months. She has been diagnosed with EDS. Watch the videos below to hear about the family’s ordeal.  Similar articles appeared on Yahoo Shine and in the news. Watch them on the  Katie Couric Show  which aired on […]

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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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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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