Archive for the ‘Parenting Ehlers-Danlos’ Category
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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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