Archive for the ‘Family’ Category

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Australian “Jelly-Jointed Sisters” Fight Ehlers Danlos Syndrome Together

Posted on June 26, 2014

We are very excited about the addition of our first Australian Group to our Ehlers Danlos Syndrome Support Group Family! By DANIEL BATEMAN.   Elyshia and Emily Hickey may appear to be typical, healthy teenage girls. On the inside, however, they are battling a rare genetic disease that has given them the joints of elderly women. The Cairns […]

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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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Six-year-old Lillie-Grace Fights Daily Battle with Ehlers-Danlos Syndrome

Posted on June 4, 2014

This six-year-old girl may have challenges, but she attends school and has many friends. She loves dancing, singing, and swimming.  “An inspirational six-year-old girl with a rare condition has told of her daily battle with the syndrome. Lillie-Grace Tomlinson was born with Ehlers-Danlos syndrome (EDS) but was only diagnosed last year. The condition is caused by […]

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Ehlers-Danlos Group Lights up Niagra Falls for EDS Awareness Month

Posted on June 2, 2014

Ehlers-Danlos Syndrome Canada lit up Niagra Falls and spread awareness with this article in the “Niagara Falls Review”.  By Alison Langley. “They don’t look frail and fragile.” “If you look at us, we look healthy but, on the inside, there are so many problems,” said Tiffany Skladan, founder and president of the Ehlers-Danlos Syndrome Canada. Ehlers-Danlos […]

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My Invisible Illness is Ehlers-Danlos Syndrome

Posted on May 30, 2014

by Natasha Lipman. For EDS Awareness Month, Natasha wrote this article in the Huffington Post. She is the Founder & Director of the International Political Forum in the UK.    Hands up if you’ve heard of Ehlers-Danlos Syndrome? Chances are if you actually have EDS, you’d be a bit wary of thrusting your arm up in […]

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Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

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Schoolgirl Raising Awareness of Ehlers-Danlos Syndrome

Posted on May 24, 2014

Many children and adults are doing activities in May to promote EDS Awareness. Written by JORDAN DAY A zebra themed day was held at Mepal and Witcham Primary School to raise money awareness for Ehlers Danlos Syndrome (EDS). Pupil Jess Johnson has the disorder and she is pictured with mum Donna. “A little girl who […]

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Maddison wins “Australian 2014 Victorian Young Achiever Award” for EDS Awareness

Posted on May 15, 2014

Australian sisters, Maddison and Kayla, raise awareness and fundraise during EDS Awareness Month and all  year long. “A year ago, Maddison Parker, left, launched a worldwide campaign to raise awareness of Ehlers Danlos syndrome, a debilitating syndrome that affects her and sister Kayla. Picture: Kylie Else  Source: News Limited MADDISON Parker has been recognised as one of […]

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