Archive for the ‘Kids with Ehlers-Danlos’ Category

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Ayiana Lives With the Constant Pain That She Endures Each Day

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 […]

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New Castle Native Overcomes Ehlers Danlos for Swimming Success

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 […]

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Erika Gets Extreme Makeover to Her Home

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: […]

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Doctor Speaker Series

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, […]

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The Invisible Pain – Ehlers Danlos Sydrome

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 […]

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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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EDS Teen Discovers Physical and Emotional Benefits of Therapeutic Riding

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. […]

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4-Year-Old EDSer is an Inspiration to Her Family

Posted on July 29, 2013

It is amazing how resilient young children can be despite their struggles with Ehlers-Danlos Syndrome. Kaylee Kretschmer looks like a typical 4-year-old budding ballerina, but she’s a true fighter. “She was born with Ehlers-Danlos-Syndrome, a little known rare genetic condition which means her limbs dislocate easily, she is prone to bruising and is constantly tired. Her […]

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