Archive for the ‘Teens’ Category

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Is a Fractured Bone Child Abuse or Ehlers-Danlos Syndrome?

Posted on February 12, 2014

There has been much discussion lately about parents being accused of child abuse when taking their children to the ER with a dislocated joint or fractured bones. By Vincent Iannelli, M.D. “Bone broke, me fix.” “That’s the running joke in medical school about orthopedic surgeons. Of course, there is a lot more to treating broken bones […]

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Trissanna Has Ehlers-Danlos and is Helped by Local Variety Club

Posted on February 2, 2014

This BC Variety Club is a Children’s Charity Helping those in need specifically Trissanna who has Ehlers Danlos Syndrome. by  Carol Aun – Mission City Record “From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she […]

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Teenage Singer is Raising Funds for Ehlers-Danlos

Posted on December 15, 2013

Emilia has been such a blessing for this family. By Tui Benjamin, Reporter A TEENAGE singer-songwriter is hoping to hit the fundraising high notes by joining forces with a youngster battling a rare medical condition. Emilia Ward, aged 17, has the ‘X Factor’ according to Brandlesholme four-year-old Annabelle ‘AJ’ Griffin, who is now the aspiring […]

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EDS Teen Meets Pop Star Ronan Keating, Gives EDS Presentation

Posted on August 4, 2013

Jodie got to spend some quality time with Ronan Keating while he sat beside her and played a special video she had produced. U.K. Newspaper News & Star reports: “Wide-eyed excitement greeted singing star Ronan Keating, when he met two very special Carlisle youngsters. The former Boyzone frontman was in the city to perform at the […]

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Jordan Egan’s Song “Easy for an Angel” climbs the charts

Posted on July 10, 2013

Jordan has received much publicity for her iTunes song.  She is a very talented entertainer with EDS.  We are following the progress of her awareness and fundraising efforts. Jordan Egan’s song “Easy for an Angel”has climbed the iTunes chart after her appearance on the TV Show “Saturday Night with Miriam”.   “Jordan Egan’s song Easy […]

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iTunes song helps fund EDS treatment for Irish teen

Posted on July 8, 2013

Jordan is seeking creative ways to pay for her EDS treatment. Her iTunes song may help  the teenager fund EDS treatment which is not covered in Ireland. by Naomi Linehan “This weekend on Saturday Night with Miriam George surprised a loyal fan of the programme with a big bunch of flowers. Jordan Egan is 16 years old […]

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Teacher is a Guardian Angel for EDS Teen

Posted on July 2, 2013

This is a touching story of a dedicated educator who is there to support her students.  The Canadian teacher is given an award  in recognition of her efforts to enable students, like EDSer Emma Steckner, to continue to attend school and succeed. Burlington Post By Ian Holroyd   “To some, she is not just a special education resource […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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