Archive for the ‘Parenting’ Category

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Dad Discovered With EDS While Tying His Shoes

Posted on January 14, 2013

A DAD from Sheffield lived with a rare disease for four decades – until he was diagnosed by a doctor who spotted him tying his shoelaces with his wrists bent at an unusual angle. Ian Redfern’s six-year-old daughter Evie also has Classical Ehlers Danlos Syndrome, which causes her to bruise and damage her skin easily. […]

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Emily has EDS and a Creative Home Business

Posted on January 13, 2013

Those of us with Ehlers-Danlos Syndrome have a difficult time finding work.  Read about how Emily and her partner James’ Pet Care business evolved into “Comfy Bums for Eco Mums’”. “Having children is a life-changer for anyone – but for Emily Skerrett a rare joint disease meant two pregnancies left her disabled. Almost overnight she went from […]

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Jordan has Seen His Share of Hospitals.

Posted on January 11, 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 to […]

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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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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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