Archive for the ‘Parenting 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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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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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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Painting is a Great Therapy for Girl 4 with Ehlers-Danlos Syndrome

Posted on April 25, 2014

Artwork provides some comfort for this 4 year old child with Ehlers-Danlos Syndrome. By Scott Fishman, Forum Publishing Group “Nimue Fong Yee, 4, painted for the first time at Young At Art Museum in Davie during its Valentine’s Day event. The following weekend, her grandmother gave her a canvas and paints — she hasn’t stopped […]

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“For the last 10 years I was told it was all in my Head” – It was EDS!

Posted on April 20, 2014

Many of those with Ehlers-Danlos are having a difficult time getting diagnosed. RARE DISEASE SUFFERERS say it is like banging their heads “against a brick wall” trying to get specialist treatment in Ireland – and that some doctors have thought they were making their symptoms up. Ehlers Danlos Syndrome TheJournal.ie spoke to three women who […]

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