Archive for the ‘Kids’ Category

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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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Poppy Urgently Needs Her Intestines and Stomach Replaced

Posted on January 8, 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!   By Alex Ross                                                                    Published on Friday 21 December 2012 09:22        The Gazette “A BATTLING youngster is hoping to spend Christmas at home […]

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Welsh Government is Starting to Pay for EDS Treatment

Posted on January 7, 2013

It has been difficult in many countries, including the US, to get insurance and government agencies to pay for Ehlers-Danlos Syndrome treatment. Many doctors do not understand this disorder and most do not know how to treat this condition. This is a story of a successful result of a public appeal for a teenager with […]

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If Your Child Moans About Sore Legs Dont Assume They’re Just Lazy

Posted on December 30, 2012

Merrily had problems with her joints.  She was eventually diagnosed with Hypermobility, a form of Ehlers-Danlos Syndrome. When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to ill-fitting shoes (she lived […]

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Make a Wish for Emily Hain from Salisbury, North Carolina

Posted on December 18, 2012

Emily Hain from Salisbury, North Carolina was given a send-off celebration in honor of her wish to go to New York City to see the Broadway Musical, “Wicked”. Emily is undergoing treatment for Ehlers-Danlos Syndrome, a disorder marked by extremely loose joints, hyper elastic skin that bruises easily, and easily damaged blood vessels. We welcome […]

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What is Ehlers-Danlos Syndrome

Posted on December 5, 2012

“Erica was invited to explain to the whole school about a genetic disorder that nearly killed her a few years ago. It is called Ehlers-Danlos Syndrome (EDS). It is a problem with the collagen in the body so it affects every cell in the body. Every system is affected. She lives in constant pain, more […]

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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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