Archive for the ‘Kids with Ehlers-Danlos’ Category

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Emily is Learning About Ehlers-Danlos Syndrome

Posted on March 25, 2014

Emily is going through the diagnosis for Ehlers-Danlos Syndrome and has support from family, teachers and friends.   Photo by Brian Shypula, Brant News Emily Landry, second from left in front row, sits with some of her classmates at St. Patrick School during a Dress Blue Day in support of the Arthritis Society.     […]

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Ehlers-Danlos Companion Wins “Top Dog” Award

Posted on March 10, 2014

Service dogs are not only a cherished companion, but also protect and assist EDSers in amazing ways. “A cocker spaniel has picked up a top prize at Crufts for helping her owner Lucy Watts from Benfleet in Essex. Molly was announced as the winner of the Crufts Friends for Life 2014 competition. Molly and Lucy, who’s 20, […]

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12-year-old with Ehlers-Danlos Syndrome Plans to be a Veterinarian

Posted on March 9, 2014

This is a touching story about 12-year-old Ciara and her relationship with her mom. Struggling with Ehlers-Danlos pain, Ciara has developed empathy for hurt animals and wants to be a veterinarian someday. By MARY BILLITER “She can’t walk for long periods of time. This I had forgotten until she suddenly wasn’t by my side in the […]

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“US Operation is My Only Hope of a Life Without Pain” from Ehlers-Danlos

Posted on February 23, 2014

Dismissed by the NHS, Nina now intends to raise £70k to have a life changing surgery at the CHIARI institute in the US. She says, “If I do not try to raise the money, then it is only a matter of a few years before my life will end.” By ROB SMYTH “As most people head towards […]

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Life as a Medical Zebra with Ehlers-Danlos Syndrome

Posted on February 18, 2014

16 year old Sean wrote an article in his school newspaper about his experience with EDS. He did an excellent job describing the impact that EDS has on a teenager.  By: Sean Earley “My name is Sean Earley and I am a Zebra. No, I am not actually a human zebra. I have been living with […]

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Ehlers- Danlos Family is in Dire Need for Health Care Coverage

Posted on January 17, 2014

  Many EDS families are having problems dealing with the  Health Insurance Marketplace.  By JENNIFER SUMMER “Spending hours on the phone talking to various health care representatives was not the way Summerwood resident Sabrina Carr had planned to spend her holiday break with her family. Sabrina, who was diagnosed with fibromyalgia, Peripheral Neuropathy, Myofascial Pain Syndrome […]

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Teenage Singer is Raising Funds for Ehlers-Danlos

Posted on December 15, 2013

Emilia has been such a blessing for this family. By Tui Benjamin, Reporter A TEENAGE singer-songwriter is hoping to hit the fundraising high notes by joining forces with a youngster battling a rare medical condition. Emilia Ward, aged 17, has the ‘X Factor’ according to Brandlesholme four-year-old Annabelle ‘AJ’ Griffin, who is now the aspiring […]

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Bethany Puts Aside Ehlers-Danlos to Help Others This Christmas

Posted on December 3, 2013

 Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]

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