Archive for the ‘Family’ Category

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Book Review: The Bendy Twisty Zebra by Kimby Maxson

Posted on February 23, 2023

Move over, Dr. Seuss! Make room on children’s bookshelves for The Bendy Twisty Zebra written by Kimby Maxson and illustration by Ron Houchens. With colorful characters, catchy rhymes, and a heart-felt message, The Bendy Twisty Zebra brings to mind some of Dr. Seuss’s famous books. While children of all ages (even grown-up children!) can enjoy […]

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Author Jessica MacLean on how writing saved her and what she learned from her ancestors

Posted on December 22, 2022

For January’s Chronic Pain Partners post (our monthly newsletter), journalist Karina Sturm spoke with author and fellow EDS warrior, Jessica MacLean. Despite never being able to hold a pencil correctly, MacLean was first published during high school, and she became a writer. The Arizona native’s recently published book, Arizona Rain, tells the stories of her […]

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Being different doesn’t mean that you’re alone with EDS

Posted on February 21, 2018

No More Monkey Bars: A 13-Year-Old’s Journey With A Rare Genetic Condition by Isabella ‘Kitty’ Yim An email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote: “Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her […]

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Ian’s story: 4 Year Old Living with Ehlers-Danlos Syndrome

Posted on January 29, 2017

    Our free EDS Awareness program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… EDSawareness.com offers FREE Educational Sessions twice/month! To receive webinar announcements via email, Click Here To watch video RECORDINGS of previous presentations, Click Here  

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Family Struggles With Ehlers-Danlos Syndrome

Posted on October 14, 2016

By Mary Thomsen Courtesy of the Valders Journal The full calendar in the Schmitz kitchen does not quite paint the picture of a typical month for an active family, but every appointment helps the family get on with life. “My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, […]

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Ian’s Story: A 4-Year-Old Living with EDS

Posted on July 27, 2016

By Taylor Barth   LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise […]

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The Reality of Ehlers-Danlos Syndrome

Posted on December 1, 2015

After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]

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