Archive for the ‘Teens’ Category

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Ehlers Danlos Grad Eyes a Career in Nursing

Posted on July 27, 2014

Lauren is thankful for the nurses who helped with her Ehlers Danlos Syndrome and many surgeries. She says, “I just want to pay that back and help other people.” She plans to go to nursing school. Despite her own struggles, Lauren manages to help others by volunteering and spreading EDS awareness. BY DIANE M. BITTING. When Lauren K. Muschlitz was a freshman at […]

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Emma is Raising Awareness of Hypermobility Syndrome

Posted on July 20, 2014

This upbeat UK teenager has overly flexible joints and chronic pain. Emma hopes to use her experience to raise awareness of Hypermobility Syndrome and help give back. “An inspirational teenager is hoping to raise awareness of a debilitating medical condition which can leave her in constant pain, exhausted and bed-bound for days. Emma Beauchamp was a sporty […]

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Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Posted on July 20, 2014

We are tracking Lucy’s progress as an advocate for Ehlers Danlos Syndrome awareness in the UK. Lucy and her dog Molly won the “Friends for Life” award at Crufts. Watch her inspiring video which demonstrates her perseverance and positivity as she fights life-threatening symptoms. By Katie Mansfield. INSPIRATIONAL Lucy Watts has made a short film to […]

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Girl with Ehlers Danlos Syndrome Wins Beauty Pageant

Posted on July 19, 2014

Eleven-year-old Hayley continues to compete in beauty pageants despite her struggles with Ehlers Danlos Syndrome.  Hayley uses this as a platform for fundraising and to spread EDS awareness! It’s a family-orientated competition where entrants must take part in a community project – extra points are awarded to those raising money for charity and helping in the community. By Exeter Express & Echo […]

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Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation

Posted on July 3, 2014

The OPUS hospital music program helps James cope with Ehlers-Danlos pain. In addition, a recent study showed 29% lower anxiety levels and a lower average breathing rate in patients who were played music during their operations. Click here  to watch videos demonstrating how the OPUS music therapy program is helping patients. By Dan Russell,  Nottingham Post. “MUSIC is helping an 11-year-old boy […]

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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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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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