Archive for the ‘Caregivers’ Category

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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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College is Very Supportive of Mitch’s Ehlers Danlos Syndrome

Posted on November 9, 2013

 Mitch’s career is on the up swing after graduation. He landed a good job in spite of his challenges with Ehlers-Danlos Syndrome. The future is looking bright for Mitch Gregory. He’s got a good job at Frome Community College and is on the road to a successful career. But Mitch is very different to other […]

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10-year-old with EDS Gets Outpouring of Support From Her Community

Posted on October 27, 2013

Zoe is living with Ehlers Danlos Syndrome but has been fortunate to receive help from those in her community aware of her condition and needs.  By Meghan Balogh, Napanee Guide “Zoe Hennessy and her mom Heather headed out of their Roblin home on Saturday morning. Little did 10-year-old Zoe know, it was a ploy to get […]

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Pokemon is Favorite Game for Cameron Who has Ehlers-Danlos Syndrome

Posted on September 26, 2013

Pokemon is Cameron’s way to show the world how proficient he is with card games.  “A mother who set up Dunstable’s first Pokemon club so her poorly son could play his favourite game is handing over the reigns after five years. In that time, 14-year-old Cameron Dilley – who has chronic fatigue due to Ehlers-Danlos […]

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Listen to Radio Talk Show on “EDS Pain Management”

Posted on September 14, 2013

EDS Awareness was invited to participate in Radio talk show about EDS Pain Management. It aired on Monday night, 7/22/2013. (Click on the title above to listen to a replay of the interview.)  You will also learn about the EDS Awareness Support Group program. Click here  to listen to the radio show (after commercial). Enjoy the program. We appreciate your Likes […]

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Obstacle Course Competition Raises Funds for Girl with Vascular Ehlers-Danlos

Posted on September 8, 2013

  This is a fund raising event for young Annabelle Griffin who has Ehlers-Danlos Syndrome. By Tui Benjamin, Reporter. “FITNESS freaks from across Greater Manchester are being called upon to take part in a gruelling obstacle course for a youngster with a life-threatening disease. Annabelle Griffin, aged four, of Wilby Close, Brandlesholme, has Vascular Ehlers-Danlos Syndrome […]

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Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)

Posted on August 24, 2013

Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients. Click here to start the video program About This Session Cincinnati Children’s Hospital Medical Center […]

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Book Purchases Will Help EDSer Get Mobility Van

Posted on August 20, 2013

You can help EDSer Erika by purchasing the novel entitled “Pearl, MD”. Proceeds will help Erika and her family purchase a van to transport her in her wheelchair! “For the next 60 days, all author proceeds from the sale of Pearl, MD will be donated to the family of Erika Heitman, a 14-year-old girl from Carolina […]

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