Archive for the ‘Joint Hypermobility’ Category
Posted on December 1, 2013
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 […]
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 […]
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 13, 2013
Don’t miss these videos! Dr. Francomano, EDS expert, talks about Ehlers-Danlos as a multi-dimensional disorder that can profoundly affect quality-of-life. She describes how EDS affects multiple body systems–musculoskeletal, neurological, dermatological, cardiovascular, gastrointestinal, and immunological. She discusses pain, fatigue, autonomic dysfunction, and much more. Chiari, Fibromuscular Dysplasia, CVID, and Mast Cell Activation Disorder are also mentioned. […]
Posted on November 5, 2013
We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]
Posted on October 18, 2013
What an exciting opportunity to promote EDS Awareness with this marathon in Columbus, Ohio! Click here to see Heather at Mile 24 The Nationwide Children’s Hospital Columbus Marathon & ½ Marathon is pleased to announce its field of “Patient Champions” who will represent 24 of the 26.2 miles on this year’s course. Two of the […]
Posted on October 17, 2013
Heather represents EDS patients at the Nationwide Children’s Hospital Marathon in Columbus, Ohio on October 20, 2013. Our Columbus EDS Support Group will join Heather to promote EDS Awareness to the public! Each mile marker features a Children’s Champion, each with a different health condition. She will be at mile marker 24. Here is her story: […]
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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