Archive for the ‘Community’ Category

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CrowdMed.com Website Helps Solve “Medical Mysteries”

Posted on February 7, 2014

CrowdMed.com helps patients collaborate with others as they explore rare medical conditions, such as Ehlers-Danlos Syndrome. Many have received suggestions that they can research and take to their doctor. Always consult your doctor first. BY: Kate Merrill NEWBURYPORT (CBS) – “Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old […]

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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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Doctor Speaker Series – “EDS: A Dental Perspective” – Recording Available

Posted on December 5, 2013

Our presenter for December 4th was Dr. Carl Mentesana, DDS.                         His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 7 minutes into the program   Addendum to the Patient Q & A Question: Please post the […]

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