Please note: the author is based in the United States, so these are resources available in the US. Check with your school or local government education office or website for processes available in your country. The Individuals with Disabilities Education Act (IDEA) is the law in the United States that ensures every child in public […]
Living with Ehlers-Danlos Syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers and is made more complicated when having to manage a chronic illness. Many times, […]
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 […]
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 […]
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 […]
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.
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 […]
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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In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”