Kids with Ehlers-Danlos

Kimby Maxson, a woman with curly brown hair is standing in a bright room with an orchid in the background.

Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book

The story of Rose, a young girl zebra, is the heart of Kimby Maxson’s children’s book The Bendy Twisty Zebra. Rose, her friends, and the book’s encouraging message are all based on Kimby’s real-life experiences navigating the world of doctors, hospitals, and diagnoses for her daughter, Jade. Kimby, a massage therapist and bodywork specialist from […]

A picture of a young girl with brown hair and a pink tie in her hair sitting at a table writing.

Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes

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 […]

A woman on a couch reading a book while the sun shines through a large window.

4 Tips on How To Navigate School as a Student with Ehlers-Danlos Syndrome

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, […]

A blurred image of a person running at the beach.

Unaccommodating Accommodations

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 […]

Two boys sitting in the grass reading a book.

Book Review: The Bendy Twisty Zebra by Kimby Maxson

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 […]

Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!

Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!

Vascular Ehlers-Danlos condition is an inherited connective tissue problem that is brought about by deficiencies in a protein called collagen. It is viewed as the most extreme type of Ehlers-Danlos disorder (EDS). Common symptoms incorporate thin, transparent skin; bruising; specified facial appearance; and fragile arteries, muscles, and inside organs. Vascular EDS is generally caused by […]

How Can Schools Better Understand Ehlers Danlos Syndrome?

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]