Archive for the ‘Kids with Ehlers-Danlos’ Category

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Fatigue in Ehlers Danlos Syndrome

Posted on June 23, 2013

These parents of children with EDS are empowering them with the confidence and understanding to develop their own independence. “Does Ehlers Danlos Syndrome Make You Tired?” by Jenny; Cheetahs In My Shoes & Just Photos By Me | “I was going to call this post “Fatigue in Ehlers Danlos Syndrome” but that sounds a bit grown up […]

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Ehlers-Danlos & the “Spoon Theory” get attention on BBC News

Posted on June 21, 2013

Many EDSers use the “Spoon Theory” to explain their fatigue and limitations due to the acute-chronic pain cycle.  BBC  News presents a series on “insights into disabled life” which shares the “Spoon Theory” with the public audience.  We hope this will increase awareness & understanding of  the compromises we EDSers must make to manage Ehlers-Danlos […]

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Racing Wheelchair Helps EDS Teen Participate in School Sports

Posted on June 1, 2013

Michael was diagnosed with EDS at age 10. He also suffers from Dysautonomia, which is fairly common in the EDS population. He is able to remain active in basketball and track using his own wheelchair.   Gulf Coast News Today ROBERTSDALE, Alabama — “Michael Parnell, the 13-year-old son of Silverhill resident Tia Parnell, was recently presented […]

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Michelle Receives Ehlers-Danlos Treatment at Lurie Children’s Hospital

Posted on May 31, 2013

 Michelle sees 14 specialists at Lurie Children’s Hospital in Chicago. By Jerrilyn Zavada of The Times “In 2011, Michelle Soria was diagnosed with idiopathic scoliosis, a curvature of the spine that occurs during adolescence.The Times featured Michelle’s plight with scoliosis in a September 2012 feature.The 13-year old rural Ottawan was given an explanation on Oct. […]

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Listen to a song about EDS Awareness

Posted on May 18, 2013

A song written about EDS awareness.  “The Cure”. Please listen and share. This talented songwriter has Ehlers-Danlos Syndrome, Hypermobility type. Click here for original source of video We appreciate your Likes and Comments

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A “Normal” Day for EDS Family

Posted on May 15, 2013

Families with EDS have additional challenges to overcome on a daily basis.  This family handles EDS with flexibility, care and understanding.   by Jenny; Cheetahs In My Shoes & Just Photos By Me “What’s a ‘normal’ or ‘average’ day for any family?  Get up, breakfast, school/work, home, eat, bed?  With the normal essentials of washing, homework […]

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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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Dad Discovered With EDS While Tying His Shoes

Posted on January 16, 2013

A DAD from Sheffield lived with a rare disease for four decades – until he was diagnosed by a doctor who spotted him tying his shoelaces with his wrists bent at an unusual angle. Ian Redfern’s six-year-old daughter Evie also has Classical Ehlers Danlos Syndrome, which causes her to bruise and damage her skin easily. […]

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