Archive for the ‘EDS Diagnosis’ Category

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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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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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Dr. Collins Video: Ehlers-Danlos Syndrome’s Affect on Gastrointestinal Function

Posted on November 14, 2013

Dr. Heidi Collins, EDS expert and patient, talks about how Ehlers-Danlos affects digestion, nutrition, bowel function, and gut-related immune function. She indicates that gastrointestinal complications of EDS are common, potentially disabling, under-appreciated by clinicians, and well-documented in existing literature. Learn more from her very informative video presentation. Be sure to watch all 6 presentations by […]

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Canadian medical conference on Ehlers-Danlos Syndrome

Posted on October 13, 2013

Erika helped to coordinate a medical conference on Ehlers-Danlos Syndrome connecting EDS experts with Canadian neurosurgeons, geneticists and pediatricians. On Oct. 12th, experts including Dr. Fraser Henderson spoke to the group. Erika also shared her experiences. By Susan Gamble, Brantford Expositor When Erika Crawford desperately needed a complex operation that was perfected in the U.S. and not covered by OHIP, […]

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British celebrities increase awareness of Ehlers-Danlos Syndrome

Posted on June 24, 2013

  British celebrities who have Ehlers-Danlos Syndrome –  it’s time to be open about it! Celebrity, Cherylee  Houston and I have Ehlers-Danlos Syndrome. Never heard of it? Neither had  I !! “Now” is a British online magazine: Now Says by Saffron Powell, Senior Designer     Corrie’s Cherylee  Houston made TV history bringing her real life […]

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I Had to Wait Until 50 to Get the ‘Verifiable’ Diagnosis

Posted on June 22, 2013

Many of us have struggled with finding our diagnosis. Our surveys indicate more than 50% have looked for > 20 years. This is a story of an EDSer  who finally found a “Name for the Pain”. Written by essexcobs, “Not only have I had to wait until 50 to get the ‘verifiable’ diagnosis, even after I […]

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