Archive for the ‘EDS Diagnosis’ Category

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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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Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?

Posted on February 12, 2014

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 […]

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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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CrowdMed.com Website Helps Solve “Medical Mysteries”

Posted on February 7, 2014

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 […]

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Ehlers-Danlos Syndrome? More Claims of “Child Abuse” Emerge

Posted on January 10, 2014

If you have been following the story about the Huber’s being arrested for child abuse you can relate to this new story in North Texas of undiagnosed bone fractures resulting in a criminal or child custody case. by JANET ST. JAMES DALLAS — “Cell phone video is the only way Darlyn Harrell and Adam Bonham can […]

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What’s your opinion? 23andMe Genetic Testing Debate-RECORDING NOW AVAILABLE

Posted on December 9, 2013

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 […]

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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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