Archive for the ‘Kids with Ehlers-Danlos’ Category

Posted on December 3, 2013
Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]

Posted on November 26, 2013
This courageous young lady has a faith in God that helps her manage her pain from Ehlers-Danlos Syndrome. By: Daniel Elizondo Silsbee, TX Living life as a vibrant 14-year old teen is the epitome of life. Football games, birthday parties, hanging out with friends. It’s that age when you are on the brink of maturing […]

Posted on November 11, 2013
Kyler’s love of sports and his perseverance lead him to swimming as the greatest love in his life. By Corey J. Corbin NEW CASTLE — Imagine feeling excruciating pain when you wake up each morning. “Same thing when you try to walk down the stairs to start your day — or even attempt […]

Posted on October 22, 2013
Erika Heitman, who has Ehlers-Danlos Syndrome, now has a more accessible home – thanks to the work of the nonprofit organization Welcome Home Angel. By Zach Hanner Breakingnews@StarNewsOnline.com “A crowd of around 40 people gathered at the quaint little cottage on Carolina Beach. They chanted, “Move that lift! Move that lift,” a la “Extreme Makeover: […]

Posted on September 18, 2013
EDSawareness.com is excited to be offering this Doctor Speaker Series to our EDS Membership. We are limited in the number of openings so please dial in early (by telephone only) to attend the program. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our speaker for September 18 was Dr. Stephane Treyvaud. Dr. Treyvaud is an adult, […]

Posted on August 29, 2013
Many people are living with chronic pain from a number of disorders. The INvisible project is focusing on awareness of chronic pain including Ehlers-Danlos Syndrome. “In 2009, photographer and Ehlers-Danlos Syndrome survivor, Syd London, had an idea for a photo documentary that she entitled, INvisible Project. It was her vision to bring public visibility to […]
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 […]

Posted on August 11, 2013
Riding gives Karley the chance to get away from everything that is happening in her life. Building an emotional connection with the horse helps her to focus on riding instead of her pain. By ALLISON HERR, 17 freestyle@lnpnews.com TEEN FEATURE “Sixteen-year-old Karley Hill exudes optimism and is able to share that optimism easily with others. […]