Archive for the ‘Awareness’ Category

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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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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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EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available

Posted on November 27, 2013

EDS Awareness invites you to watch this FREE webinar recording! Our presenter for November 20th was  Stephanie Gandomi, MS, CGC, LGC She is a Licensed Genetic Counselor Her topic was: “The Evolution of Genetic Diagnosis and Why This Matters In Patient Care!” The recording of this presentation is now available at the following link:  Click here to […]

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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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