Archive for the ‘Caregivers’ Category

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8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV

Posted on December 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]

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Nicola Gets Help From Fiance for Her Hypermobility Syndrome

Posted on December 13, 2014

Nicola’s story brings awareness to how difficult life can be with hypermobile joints.  She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]

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5-year-old NC Boy Avoids Bumps Due to Vascular Ehlers Danlos Syndrome

Posted on November 14, 2014

 This is a very touching story about 5-year-old Matthew’s struggle to understand his Type IV Ehlers Danlos Syndrome. “It’s really sad to say my wife knows more about it than the doctors,” says his father, Joshua, who was diagnosed last year. At 33 years old, he finally discovered the reason for his multiple vascular ruptures. His son is […]

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Chair-bound Bride with Ehlers Danlos Syndrome Walks Down the Aisle

Posted on October 25, 2014

Natalie’s joints dislocate up to 300 times a day, but she achieved her dream by walking down aisle on her wedding day.     Natalie Allan, 24, is thought to be the only person in the UK to suffer from the rare form of 7A Ehlers Danlos syndrome. The progressive condition, commonly known as EDS, causes […]

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Concern Over Subsidised Water Bills for Ehlers Danlos Syndrome

Posted on October 10, 2014

This Irish mother feels the uncertainty over special water allowance limits are an “insult to the ill”. Her daughter, Lauren, has EDS and intestinal failure. It requires extensive water usage to manage her condition. The government and water department are to publish a list of illnesses which will allow sufferers to have their water bills capped. However, Lauren and her […]

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CSU Spoonies Help Students with Ehlers Danlos Syndrome

Posted on September 25, 2014

Students with chronic health conditions can get support from the Colorado State University “Spoonies” and the CSU Chronic Health Mentoring Program. We applaud these programs and hope they can serve as a model for other universities.  by Amanda Thompson. “Imagine a typical weekday for a college student. They go to classes, study, hang out with friends and participate in other leisurely activities. […]

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10-year-old Boy with Ehlers Danlos Inspires Hospital Staff

Posted on August 30, 2014

Toby Skerman has been promoting EDS Awareness in the UK.  This 10-year-old boy who is a patient at Great Ormond Street Hospital has inspired staff to raise funds for his wheelchair. By: Mid Sussex Times Toby Skerman, of Uckfield, has inspired staff at the Nuffield Hospital to raise enough funds to buy him the Beach Hippocampe wheelchair […]

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