Coloring book aims to raise awareness of rare genetic disorder

Feb. 19—EAU CLAIRE — Just days after launching a Kickstarter campaign to fund a coloring book to raise awareness of her rare genetic condition, the community showed its support of Pey Carter and her goal by fully funding the project.

"Dazzle On: An Ehlers-Danlos Coloring Book" features a collection of pictures designed to help educate people on Ehlers-Danlos syndrome and other chronic disabilities.

EDS is a group of rare genetic disorders affecting the connective tissues that support most parts of the body, including the skin, bones, blood vessels and other organs. According to the National Library of Medicine, at least one in 5,000 individuals live with some form of EDS worldwide.

Carter and her 10-year-old daughter, Abigail, each live with the hypermobile variation of EDS.

"I'm fully disabled with it," the Eau Claire-based author said. "(Abigail) is not, yet she has accommodations that other kids kind of struggle to understand because she looks typical. So, she wanted to do a picture book that explained about Ehlers-Danlos for other kids to understand. And, along those lines, we thought, 'Huh, it would be really fun to do a coloring book based on Ehlers-Danlos, as well.'"

From there, Carter got to work compiling 33 pages of EDS and other chronic disability-related designs and puns. Zebras, the mascot of EDS, are also heavily featured. Phrases like "My joints go out more than I do," "Flexy and I know it" and "Chronically awesome" were selected to both educate and bring humor to a serious topic.

"Dazzle On" is a Kickstarter exclusive project. Available only until March 10, interested donors may contribute to Carter's campaign at different tier levels. Each level comes with a variety of gifts, including the book, art supplies and other items. Donors will receive their books in mid-April.

Carter said her initial goal was to raise $300. As of Friday, 24 backers had contributed $749.

Ultimately, Carter said it was her daughter who truly motivated her to educate others in this way. She explained how the accommodations Abigail needs in school — special seats, writing tools, walking breaks — aren't always understood by her peers. Abigail even has Carter come into her class at the start of each new school year to talk about EDS, Carter added.

"As a longtime advocate — because I have multiple chronic illnesses, I don't just have one — I understand how visible disabilities are easily seen, but invisible disabilities aren't," Carter said, noting that she currently lives with eight chronic illnesses.

"For kids that don't have visible disabilities, it's hard navigating that, as kids don't understand," she added. "They struggle to put words to it. My daughter struggles to explain why she needs those accommodations."

Carter, a veteran and former broadcast journalist, didn't know much about EDS, herself, until she reached adulthood, as the condition can be very difficult to diagnose. She said it can take some people 10-12 years, or even decades, to get a diagnosis. It's her hope that "Dazzle On" might help shed some more light on the condition.

"Representation in literature is really important," Carter said. "And, yes, that includes coloring books as well. Because we're such a diverse world."

Another one of Carter's goals in creating the coloring book is to "build a better world for the next generations." She stressed the importance of helping more people understand that differences are OK. Those differences, she said, allow for people to form their own unique abilities and perspectives on the world.

In addition to writing, Carter also does advocacy work, speaking on topics like military sexual trauma, mental health, disabilities, sexual assault and domestic abuse. She is currently working on a memoir about her life and her journey from being able-bodied to disabled.