Archive for the ‘Teens’ Category

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Nine-year-old with Ehlers Danlos Syndrome goes to Disney World

Posted on October 3, 2014

Nine-year-old Elisabeth O’Brien will go to Disney World with “Kidd’s Kids” and celebrate a “a big awareness day” for Ehlers Danlos Syndrome. BY STEVE PALISIN. “A 9-year-old “Kidd’s Kid” from Socastee and her family are going to Walt Disney World in November, thanks to the generosity of a morning radio show’s listeners on the Grand Strand and nationwide. […]

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EDS Awareness Educational Series – Recording Available

Posted on September 17, 2014

Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]

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Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome

Posted on September 6, 2014

Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan also participates in the EDS support group in Columbus, Ohio. By Steve Blackledge “Les Somogyi couldn’t help but feel for […]

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Maddison Parker to Meet Australian Prime Minister to Discuss Ehlers Danlos Syndrome Research

Posted on September 2, 2014

Maddison Parker is looking forward to having five minutes with Australian Prime Minister Tony Abbott to talk about Ehlers-Danlos Syndrome. Her persistence seems to be paying off – she is awaiting a date and time to be confirmed for the meeting. “MADDISON  Parker is one step closer to getting five minutes with Prime Minister Tony Abbott. […]

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Irish Brothers raise awareness of Ehlers Danlos Syndrome

Posted on August 23, 2014

The Barrett family is determined to raise awareness of Ehlers Danlos Syndrome in Ireland. Their three boys have all been struck with EDS. They were fortunate to see world-renowned EDS expert, Dr. Rodney Grahame. However, medical treatments can cost up to €30,000 for patients from Ireland. They thank all those who have supported efforts to raise funds for treatment. […]

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Life as a zebra

Posted on August 18, 2014

An aspiring and promising young gymnast learns that she will never be able to compete again after a reconstructive surgical operation goes wrong. When her body starts to break down, she hunts for answers only to find that it would stump even the best of doctors available in the Midwest. But when she almost loses […]

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“EDS Awareness Educational Series” Webinar – Recording Available

Posted on August 12, 2014

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored by www.bodysupportstore.com    WHAT:  ““EDS Awareness Educational Series” – a webinar program hosted by EDSawareness.com   PRESENTER:   Dr. Derek Neilson – Assistant  Professor […]

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Maddy Parker is Ehlers Danlos Ambassador and “Child of Courage”

Posted on August 1, 2014

We have been tracking 11-year-old Maddy’s exceptional work as she raises Ehlers Danlos awareness in Australia.  By ELISSA DOHERTY. Maddy Parker runs a campaign to raise awareness for the Ehlers Danlos syndrome that both she and her sister suffer from. SHE’S a cotton wool kid whose joints can dislocate by simply picking up a book, but Maddy […]

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