EDS Diagnosis
CrowdMed.com Website Helps Solve “Medical Mysteries”
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 […]
What’s your opinion? 23andMe Genetic Testing Debate-RECORDING NOW AVAILABLE
Listen to a debate about ethical and legal issues of direct-to-consumer genetic testing. Link is provided below. The debate was spurred on November 22, when the FDA ordered the 23andMe company to stop marketing its product– $99 genetic test offered direct-to-consumers. The FDA warning letter indicated that the company hadn’t secured marketing authorization and expressed concern that inaccurate results could […]
Jeff with EDS – “I Just Need to Give my Crazy Movie a Good Ending.”
By ED KEMMICK/Billings Gazette Jeff Hanson has EDS and while struggling with it he is determined to stay strong and make the best of this situation. “Jeff Hansen has Ehlers-Danlos syndrome, a rare connective tissue disorder with symptoms that include extreme flexibility. In mid-November, Jeff Hansen knew he’d reached an important milestone. He […]
Watch Ehlers-Danlos episode on “Good Morning America” – Video Link
“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 […]
EDS Awareness Speaker Series – The Evolution of Genetic Diagnosis – Recording Available
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 […]
Ayiana Lives With the Constant Pain That She Endures Each Day
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 […]
TV News Report: Ehlers-Danlos Leads to Bogus Child Abuse Allegations – Watch Videos
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 […]
Dr. Collins Video: Ehlers-Danlos Syndrome’s Affect on Gastrointestinal Function
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 […]
