Diagnosis
Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?
There has been much discussion lately about parents being accused of child abuse when taking their children to the ER with a dislocated joint or fractured bones. By Vincent Iannelli, M.D. “Bone broke, me fix.” “That’s the running joke in medical school about orthopedic surgeons. Of course, there is a lot more to treating broken bones […]
Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome
The diagnosis was bittersweet. It was good to finally have an answer …. Ehlers-Danlos Syndrome! By Emily McComas CHARLESTON, W.Va. — Kyli Wolfson was losing hope. “For most of her life, she had struggled with a lack of energy. She couldn’t keep up with her peers in middle school gym class and tried to work with […]
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 […]
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 […]
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 […]
Innovative Blood Test for Vascular Ehlers-Danlos Syndrome
Researchers are making some progress discovering a potential biomarker for aortic dissections related to Vascular Ehlers-Danlos Syndrome. Posted by: Anna Ishibashi “Researchers from ShrinersHospital for Children, OregonHealth & ScienceUniversity, Baylor College of Medicine and the Texas Heart Institute, have demonstrated for the first time that fibrillin-1 in the blood stream could be a biomarker to diagnose aortic aneurysms and aortic dissections. […]
