Archive for the ‘Kids’ Category

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Emily Comber Discusses Her Life With Ehlers-Danlos Syndrome

Posted on December 7, 2013

Emily has learned to deal with the challenges of raising 2 children despite her Ehlers-Danlos Syndrome. By EMMA INNES “A mother has been left devastated by a rare condition that leaves her barely able to cuddle her children. Emily Comber, 31, suffers from a rare syndrome that causes her constant pain and makes her joints ‘pop […]

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Bethany Puts Aside Ehlers-Danlos to Help Others This Christmas

Posted on December 3, 2013

 Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]

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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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Erika Gets Extreme Makeover to Her Home

Posted on October 22, 2013

Erika Heitman, who has Ehlers-Danlos Syndrome, now has a more accessible home – thanks to the work of the nonprofit organization Welcome Home Angel. By Zach Hanner Breakingnews@StarNewsOnline.com “A crowd of around 40 people gathered at the quaint little cottage on Carolina Beach. They chanted, “Move that lift! Move that lift,” a la “Extreme Makeover: […]

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