Archive for the ‘EDS Diagnosis’ Category
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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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