Posts Tagged ‘Dealing with EDS’

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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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Poppy Urgently Needs Her Intestines and Stomach Replaced

Posted on January 9, 2013

What an incredible story of a 5 year old girl who got to come home from the hospital for Christmas. How difficult EDS can be to even the youngest of our community!   Click picture for full article We welcome comments and Likes regarding this story

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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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Laura’s “Can-Do” Spirit Persists with EDS

Posted on December 4, 2012

“Lyons received an associate’s degree from LLCC in May. Making the greeting cards keeps her busy and makes her feel useful”, she said. Among cards are ones with sayings ‘Congrats On Your New Job’ (with three-dimensional flowers), ‘Sending Thanks Wishes with Gratitude and Appreciation For You’ and ‘Wishing you all the happiness that your holiday […]

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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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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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Em Made it to the Conference!

Posted on August 21, 2012

We wrote about Em before the EDNF Learning Conference in Cincinnati, Ohio. She is a very brave young lady. Her mother tells us how she is doing. “But, my kid is pretty amazing. Growing up is challenging under the best of circumstances – adding to that mix complicates things exponentially. Em has had a rough […]

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