Archive for the ‘Caregivers’ Category

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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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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When EDS Strikes Families

Posted on April 5, 2013

By Sandra Strege-Mims Barr,  PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]

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Performers helping to Raise Funds for EDSer

Posted on March 5, 2013

By Kathryn Bradley Friends rally to help Carlton Colville woman with debilitating condition Young performers will take to the stage next weekend to raise funds for a talented musician whose promising career was ended by a debilitating genetic condition. Heather Willis, from Carlton Colville, was a keen performer, singer, harpist and flautist before being diagnosed […]

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Being Your Own Advocate

Posted on February 22, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group “ many times have you or loved one or a friend been told something totally wrong about your condition from a doctor?  Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]

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Fight to be Upright! Charlie’s Campaign for Lifesaving Surgery

Posted on January 22, 2013

Charlie needs a life saving surgery in Maryland.  Many fund raising activities are raising the money needed. Charlie’s Battle with Ehlers-Danlos Syndrome, Cranio-Cervical Instability, and Chiari Malformation. Charlie was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder he inherited from his mother, Christine. Individuals with EDS have a defect in their collagen, the main component […]

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Erika is Doing Better But Still in Pain

Posted on January 20, 2013

Erika is doing much better after a very expensive surgery in Maryland. By Susan Gamble, Brantford Expositor Sunday, January 20, 2013 10:30:40 EST AM ST. GEORGE – Erika Crawford is tired. In fact, she looks exhausted.     “She smiles broadly for a photo op at the local pub in her village, the St. George Arms, […]

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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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