Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book

In May, we published an article about a new children’s book about EDS, invisible illness, and disability–Bendy Bones and Stretchy Skin: An EDS Story. In this book, a young girl named Abigail struggles with her Ehlers-Danlos Syndrome and the effect it has on her life. Some of Abigail’s  friends and classmates don’t understand why she needs special help at school and can’t participate in some activities at recess. Her mom, who also has EDS and uses braces and a wheelchair, talks to Abigail’s class and provides them with an understanding of EDS, accommodations, and some of the challenges she, Abigail, and the many people with disabilities and invisible illnesses face. Abigail’s fellow students then brainstorm ways to ensure Abigail is no longer left out from activities–especially recess!

Writer and activist Pey Carter and daughter, Abigail Bailey, from Eau Claire, WI, wrote this book together based on real-life experiences they have had.

“I wanted to do a picture book because I wanted people without EDS to understand that people with EDS have different lives,” Abigail said. “I wanted kids with EDS to know they’re not alone, that some people do actually care.”

Illustrator Katarina Stevanović uses soft colors and expressive character images to support the text of the story. The gentle and emotive illustrations encapsulate the feeling of warmth and togetherness championed by the book. 

The next step for Pey and Abigail is publication. They have created a Kickstarter that runs through July 30th. The book is available as a reward for supporting the Kickstarter as is the exclusive EDS-themed coloring book called Dazzle On that Pey created this past spring. There are fun EDS- and zebra-themed stickers, beautiful zebra notecards, and a number of Pride-themed items for rewards in addition to other special items and experiences for those who pledge their support.

Pey explains why their advocacy work, including the children’s book, is so important to them: ” I was a broadcast journalist in the Army, so I am good at speaking. I use that privilege so I can do speaking engagements and use my time to help raise awareness. I’ve been doing advocacy work now for 12 years. It’s always very fulfilling when I give a talk, and I hear people say, ‘Wow, I didn’t understand this before,’ or ‘Oh my gosh, thank you. I didn’t think there was anybody who understood.'”

While the book features characters with EDS, children and adults with invisible illnesses, disabilities, and other chronic conditions will no doubt relate to the questions Abigail is asked and the feelings of loneliness and being misunderstood she experiences. The examples of accessibility, accommodations, and understanding the book demonstrates will give students, teachers, and families ideas about how to make schools, classrooms, and educational activities available and inclusive for people of all abilities.

If you’re interested in learning more about Pey and their advocacy work, including upcoming appearances, you can check out their website. If you’re interested in supporting the Kickstarter, you can do that here. 

Kate Schultz

July 2023