Archive for the ‘Family’ Category

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“Doctor Speaker Series”: Cardiac manifestations in EDS – RECORDING AVAILABLE

Posted on May 8, 2014

  On May 7th, Dr. Staci Kallish spoke about cardiac manifestations in EDS. EDS Awareness’ Doctor Speaker Series is a webinar program hosted by EDSawareness.com and sponsored by www.bodysupportstore.com  Upcoming FREE sessions will be offered the 1st and 3rd Wednesdays of each month.  Hope you can join us!  CLICK HERE for the recording More about Dr. Staci Kallish Click […]

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Trissanna Has Ehlers-Danlos and is Helped by Local Variety Club

Posted on February 2, 2014

This BC Variety Club is a Children’s Charity Helping those in need specifically Trissanna who has Ehlers Danlos Syndrome. by  Carol Aun – Mission City Record “From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she […]

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Hypermobile UK Mum will Give the Singing Performance of a Her Lifetime

Posted on January 30, 2014

Chloe is following her dreams by giving a public performance debuting their first album Songbird. By Rene Gerryts A CHRONICALLY ill mum is to defy the odds by performing her debut album live. Chloe Evans-Lippett suffers from hypermobility syndrome that’s left her wheelchair dependent, in constant pain with hips that dislocate up to 11 times a […]

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How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness like EDS?

Posted on January 5, 2014

Ilana Jacqueline Freelance writer, patient advocate This is a challenge for all of us with a Chronic illness.  Ilana gives some great suggestions on how to handle this situation. “I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what […]

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Webinar: “Pain Management and Ehlers-Danlos Syndrome”

Posted on December 19, 2013

    Topic: “Pain Management and Ehlers-Danlos Syndrome” Presenter:  Dr. Kenneth Goldschneider from Cincinnati Children’s Hospital.   Click here to access the recording ______________________________________________ About Dr. Kenneth Goldschneider Director of the Pain Management Center at Cincinnati Children’s Hospital  MD: University of Connecticut Health Center School of Medicine, Farmington, CT, 1991. Residency: Pediatrics, Duke University Medical Center, Durham, NC, 1991 […]

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“Katie Couric Show” features Ehlers-Danlos – See the video!

Posted on December 10, 2013

Ehlers-Danlos Syndrome was discussed on the daytime talk show, Katie. We are providing links to watch the show, and encourage EDSers to add comments to the show’s website.   Watch the entire TV episode Click Here. Visit the interactive ABC TV station website, where you can chime in with your comments: Here are 2 video clips from the Katie […]

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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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