Archive for the ‘Coping Techniques’ Category

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Webinar by Dr. Peter Rowe – Recording available

Posted on July 16, 2014

  EDS Awareness invites you to listen to a replay of this FREE online learning session! Dr. Peter Rowe spoke about managing Orthostatic Intolerance in EDS.     Sponsored by www.bodysupportstore.com    CLICK HERE for a link to the recording   CLICK HERE for the slides used in this presentation     PRESENTER:   Dr. Peter Rowe is a […]

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Rowing is Still Claire’s Passion in Life, Despite Ehlers-Danlos Syndrome

Posted on March 15, 2014

Every day is a struggle for Claire, but the rewards from rowing make it all worthwhile.   Written by LYDIA FALLON “Out on the water is where Claire Connon feels most at home. Rowing down the River Cam as the sun begins to rise; wind in her hair and a smile on her face, the 28-year-old […]

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Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome

Posted on February 10, 2014

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 […]

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EDS Awareness Speaker Series – Alberto Friedmann – Recording

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 […]

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Finally Diagnosed with Ehlers-Danlos Syndrome and Chiari

Posted on October 30, 2013

 It took Karen Dixon 5 years to finally get diagnosed with EDS and Chiari. She originally discovered her symptoms while watching a show called “Mystery Diagnosis”. “While I was watching the show, I could not help but realize the similarities I had with the patient on the show”! By KAREN DIXON Editor’s note: Today, we are highlighting […]

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Is it Anxiety, Depression or POTS?

Posted on October 29, 2013

 POTS (postural orthostatic tachycardia syndrome) is a collection of symptoms that may not be easily detected or diagnosed. by Sue Ann Rybak “John Point, of Chestnut Hill, was a typical kid who loved hanging out with his friends on the basketball court. But in the Summer of 2009 he started to have flu-like symptoms: aches, fatigue, […]

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Doctor Speaker Series: Dr. Stephane Treyvaud

Posted on September 18, 2013

  We were pleased to have Dr. Stéphane Treyvaud present in our EDS Doctor Speaker Series. His presentation aired on September 18, 2013 at 9:00 pm EST.     Dr. Treyvaud is an adult, and child and adolescent psychiatrist. He is a fellow of the Royal College of Physicians and Surgeons of Canada, of the equivalent college […]

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Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)

Posted on August 24, 2013

Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients. Click here to start the video program About This Session Cincinnati Children’s Hospital Medical Center […]

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