Archive for the ‘Vascular/Cardiac’ Category

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Remembering Jane – A Quilter With Ehlers Danlos Syndrome

Posted on August 22, 2013

Jane continued to give back to others, in spite of her struggles with type-4 (vascular) Ehlers-Danlos syndrome, an incurable, inherited connective tissue disorder. By  DOUG MOE | Wisconsin State Journal “There are going to be a number of quilts in this story, but remember the blue one with houses on it. Marykay Zimbrick bought it […]

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“Some People thought it Was Growing Pains!”

Posted on May 19, 2013

Rose is struggling with Vascular Ehlers Danlos Syndrome and maintaining a positive attitude. By Chris Vetter Chippewa Falls News Bureau  Leader-Telegram                                 | “CHIPPEWA FALLS – Rose Buchmann needs a crutch to walk down the halls at McDonell High School. A rare genetic disorder is slowly causing the tissues and muscles in her body to break down, […]

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Mum and Daughter Have an Extra Special Bond that No One Can Break

Posted on May 5, 2013

This UK family is dealing with Vascular EDS which is one of the 6 Types of EDS  identified.   By Helen Rae  Chronicle Live     “Mum Danielle Wilks and her daughter Lilli-Mae have an extra special bond that no one can break. The pair have the hereditary condition vascular Ehlers-Danlos Syndrome (EDS), a rare […]

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Community responds with support for ill resident

Posted on April 27, 2013

This Ohio community has been very supportive of Andy, who has Vascular Ehlers-Danlos Syndrome. This is the most life-threatening of the 6 types of EDS. CELINA – A young man beset with an incurable disease is not alone in his medical struggle. By William Kincaid   The Daily Standard   Celina, Ohio   “The community has responded […]

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Family of Annabelle, 4, raises awareness for Vascular Ehlers-Danlos (VEDS)

Posted on April 26, 2013

Annabelle’s family is thankful that she was diagnosed early. But, that is only half the battle. The four-year-old is at high risk for ruptures, arterial bleeding and other serious complications that may occur without notice. Her family is very supportive, and raises awareness for Vascular Ehlers-Danlos (VEDS). 10:47am Friday 26th April 2013 in News By Tui […]

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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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