Archive for the ‘Parenting with Ehlers-Danlos’ Category

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Mom with Ehlers-Danlos Syndrome Gets a Grant to Pay for a Scooter

Posted on April 6, 2015

This UK mom is now more mobile!  After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to regaining her independence after receiving a £500 grant to pay for a […]

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How Can Schools Better Understand Ehlers Danlos Syndrome?

Posted on March 30, 2015

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]

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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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Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Posted on September 5, 2014

Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station.  This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video EDS Awareness Notes:  In media reports, there tend to be some  inaccuracies or misleading statements. We wanted to […]

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Carrie is Honored for Ehlers-Danlos Caregiving

Posted on August 5, 2014

EDS caregiver, Carrie Brazier, has been nominated for an award recognizing positive role models – the “Young People of the Year” (YOPEY) award.  “She is very selfless and puts everybody else first. If she was not here I could not function,” says her proud EDS mom. By Victoria West. “A carer who has helped raise money for […]

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8-year-old with Ehlers-Danlos named Honorary Ranger at Yosemite National Park

Posted on June 12, 2014

This was a dream-come-true for Gabriel, a Florida 8-year-old with Ehlers-Danlos Syndrome. “A boy with a debilitating disorder had his dream come true when he was officially named an honorary ranger at Yosemite National Park. Eight-year-old Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and […]

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Kevin’s Love of Disney Art Helps Him Manage His EDS

Posted on May 17, 2014

Kevin Graham is an inspiration to all of us struggling with Ehlers-Danlos Syndrome. By Samantha Madison – Sentinel Reporter NORTH MIDDLETON TWP. — “A few years ago, artist Kevin Graham was given about 18 months to live. During that time, he and his wife also found out they were going to have a third baby. Faced […]

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Ehlers-Danlos Syndrome Strengthens Bond Between Mom, Two Kids

Posted on May 14, 2014

Allison is there for her two children  as they face and continue their struggle with symptoms of Ehlers-Danlos Syndrome. Written by Karen Smith Staff Writer “Rupp, who recently moved to Livonia from Westland, is an inspiration to her cousin, Katie Patterson, communications specialist for Livonia Public School, who recommended Rupp to the Observer for a Mother’s Day feature. “Allison is […]

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