Archive for the ‘Managing Ehlers-Danlos’ Category

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Tri-Athlete Continues to Compete Despite Hypermobility

Posted on April 4, 2014

This determined British man competes in triathlons despite his disorder. Geoff spreads awareness for the UK Hypermobility Syndrome Association.  “GEOFF Render has defied doctors after making a remarkable recovery from an accident during a gruelling triathlon. And this summer he will tackle THREE triathlons on his adapted trusty trike and will even attempt the same tough […]

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Free Webinar: Dr. Chopra presents EDS Pain Management (Part 1 of 2)

Posted on March 18, 2014

EDS Awareness invites you to watch this FREE webinar presented by Dr. Pradeep Chopra on EDS Pain Management. (Part 1)  A recording is available for replay. Receive INVITATIONS for upcoming FREE webinars by signing up for the “FREE Report” on the homepage. Or click HERE.  CLICK HERE for the link to the recording of this webinar session.  CLICK HERE […]

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Surgery helps some Ehlers-Danlos patients; but multi-systemic effects remain

Posted on March 16, 2014

This is a remarkable story about Kelly Koep, a young lady with Ehlers-Danlos Syndrome, who is beating the odds. Her surgeon, Dr. Fraser Henderson, is still taken aback at the extent of the disabling conditions he sees in more than 500 EDS patients. EDS expert, Dr. Clair Francomano, says, “There’s a lack of knowledge in the medical community about […]

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I Have Pain from an ‘Invisible Illness’ called Ehlers-Danlos

Posted on February 21, 2014

Kelly finally received her Ehlers-Danlos diagnosis when she moved to Australia. She shares her story. By: KELLY MCQUINLAN “Looking at me you’d think nothing was wrong. I have what they class as an invisible illness. People often say “but you don’t look sick”. Little do they know how much I can suffer on any given day. I was […]

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How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness like EDS?

Posted on January 5, 2014

Ilana Jacqueline Freelance writer, patient advocate This is a challenge for all of us with a Chronic illness.  Ilana gives some great suggestions on how to handle this situation. “I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what […]

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Jeff with EDS – “I Just Need to Give my Crazy Movie a Good Ending.”

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 […]

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Innovative Blood Test for Vascular Ehlers-Danlos Syndrome

Posted on September 19, 2013

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. […]

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Doctor Speaker Series

Posted on September 18, 2013

EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]

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