Archive for the ‘Caregivers’ Category

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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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How to Help Your Ehlers-Danlos Caregiver

Posted on August 16, 2014

Caregivers are the unsung heroes in the life of the chronically ill.  They offer critical support for patients living with Ehlers Danlos Syndrome.  Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities.  by Toni Bernhard, J.D.  I know how fortunate I am to have a loving caregiver. Although he may not see it this way, […]

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Painting is a Great Therapy for Girl 4 with Ehlers-Danlos Syndrome

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 […]

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Emily is Learning About Ehlers-Danlos Syndrome

Posted on March 25, 2014

Emily is going through the diagnosis for Ehlers-Danlos Syndrome and has support from family, teachers and friends.   Photo by Brian Shypula, Brant News Emily Landry, second from left in front row, sits with some of her classmates at St. Patrick School during a Dress Blue Day in support of the Arthritis Society.     […]

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Health Care Provider Inspires Teen with Ehlers-Danlos

Posted on February 19, 2014

  By: ELLE FARCIC The West Australian An Australian teen with Ehlers-Danlos Syndrome was inspired to become a nurse after many trips to the hospital.  “Brittany Seaton may still be a few weeks off starting her nursing degree, but the 17-year-old already has an intimate knowledge of how hospitals work. The Collie teenager has endured countless […]

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Life as a Medical Zebra with Ehlers-Danlos Syndrome

Posted on February 18, 2014

16 year old Sean wrote an article in his school newspaper about his experience with EDS. He did an excellent job describing the impact that EDS has on a teenager.  By: Sean Earley “My name is Sean Earley and I am a Zebra. No, I am not actually a human zebra. I have been living with […]

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Ehlers- Danlos Family is in Dire Need for Health Care Coverage

Posted on January 17, 2014

  Many EDS families are having problems dealing with the  Health Insurance Marketplace.  By JENNIFER SUMMER “Spending hours on the phone talking to various health care representatives was not the way Summerwood resident Sabrina Carr had planned to spend her holiday break with her family. Sabrina, who was diagnosed with fibromyalgia, Peripheral Neuropathy, Myofascial Pain Syndrome […]

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