Archive for the ‘Latest Updates’ Category

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Jordan has Seen His Share of Hospitals.

Posted on January 12, 2013

Jordan is a brave young man. At nine years old he sees the need for giving to others, even while he is struggling himself with Ehlers-Danlos Syndrome. “Jordan Corvin, Saugerties boy brings joy to Columbia Memorial patients. Jordan suffers from Ehlers-Danlos Syndrome, a disorder affecting connective tissues that causes acid reflux and seizures. He goes […]

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Angels of Ehlers-Danlos Syndrome

Posted on January 1, 2013

This video describes various cases of EDS and is a memorial to some who have passed away from this devastating disease. We welcome comments and Likes regarding this story Click Here for original site of video

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Ontario Health Ministry Urged to Pay for Out-of-Country EDS Surgery

Posted on December 2, 2012

Ontario continues to have issues with uninformed doctors regarding Ehlers-Danlos Syndrome. Many EDSers, are coming to the US for medical care. This is an article about Steve Clark’s drive towards getting more support for those seeking medical care and more EDS education for doctors in Ontario.  The article was written by Susan Gamble and published in the Brantford […]

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Practical Parenting Tips for those with Physical Limitations

Posted on September 20, 2012

by Jennie Macdonald  As someone who suffers from two chronic illnesses (Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) that include fatigue and joint pain as my two major limitations, I understood the extreme need to be efficient with my time and energy in my early years of parenting. For me, a main priority was to […]

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Diagnosed with EDS, Now What?

Posted on September 7, 2012

By Amy L. Schulze “This is a set of advice that was compiled by a group of patients. It is meant to help with issues other than the formal medical advice you will receive from various doctors and therapists. Do not take this advice for something other than friendly advice from those that have more […]

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Ehlers-Danlos Syndrome Commonly Associated Health Problems

Posted on September 6, 2012

This is an interesting summary of various health problems associated with EDS “Ehlers Danlos Syndrome (EDS) is a group of inherited disorders that affects the production of collagen in the body. Textbook symptoms may include problems such as easily bruising or scarring, joints that are hypermobile, skin that is very elastic and weak tissue throughout […]

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Welsh Teenager Describes Her EDS Pain

Posted on August 28, 2012

Phoebe Bruce helps spread EDS awareness by explaining her painful EDS symptoms to the media. Constant dislocations makes it difficult to cope with what should be simple and routine daily activities. The Huffington Post reports her story: “The teenager from Wales has a rare genetic condition called Ehlers-Danlos syndrome which means the collagen in her […]

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EDS Support Group Directory in Development at www.EDSawareness.com

Posted on August 22, 2012

  www.EDSawareness.com launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain.  This was the same year my daughter was diagnosed with […]

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