Archive for the ‘Kids’ Category

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Unaccommodating Accommodations

Posted on February 26, 2023

I want to be okay. Some days I am. But some days, it feels like my words slosh about disjointed. My eyelids are heavy shades that won’t stay open. Pain suffuses every joint in my body, and the throbbing in my head makes it impossible to tolerate light or noise. Day-to-day is unpredictable, sometimes moment […]

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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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Interview with Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children

Posted on June 23, 2022

  For our July newsletter, journalist Karina Sturm spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically […]

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Cincinnati Children’s Hospital Connective Tissue Disorder Clinic Video

Posted on July 28, 2020

Cincinnati Children’s Hospital has a Connective Tissue Disorder Clinic helping children with Ehlers-Danlos Syndrome. This video celebrates the hospital’s impact on children and their families.

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Father Raising Awareness with Ryan Challenge and Vascular Ehlers-Danlos Syndrome (VEDS)

Posted on August 27, 2018

  By: Hillary Floren Posted: Aug 14, 2018 06:48 AM MDT EL PASO, Texas – Ryan Dolliver is like most 3-year-old boys.  He loves to play with his sister, laugh, destroy things and he can be mischievous. Ryan has a great smile, and when he laughs it is infectious. He has no clue he is living with […]

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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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Telling My Teammates “I Have Ehlers-Danlos Syndrome”

Posted on February 25, 2017

By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]

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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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