Student, employees collaborate to create children’s book on Crohn’s

A student at the West Virginia School of Osteopathic Medicine (WVSOM) has partnered with members of the school’s faculty and staff to publish a book intended to help children understand a disease that affects about one in 300 people in the U.S.

Kaitlynn Lopes, of WVSOM’s Class of 2027, worked with Kathleen Martin, M.D., a pediatrician and member of the school’s clinical sciences faculty, and illustrator Scott Maxwell, technical manager in WVSOM’s Office of Graduate Medical Education, to publish Connor Explains Crohn’s, a picture book intended to destigmatize chronic illness and improve health literacy for children and families.

Connor Explains Crohn’s follows a boy who informs readers about his mother’s journey through treatment for Crohn’s disease while explaining that chronic illness can be a normal part of life. Lopes’ own childhood inspired the book.

“Having grown up with a mom with Crohn’s, I wanted to create an easy-to-understand text for kids living with adults who have chronic illness,” she said. “I wished I had something like this to help navigate the confusing events of diagnosis and treatment of Crohn’s when my mother was going through the process. I was never shy about asking questions, but my parents weren’t always sure how to answer them, becausethey were learning as they were going, too.”

Crohn’s disease is an inflammatory bowel disease that affects the gastrointestinal tract. The condition can result in abdominal pain, fatigue, diarrhea and unintended weight loss.

In the 29-page book, which is available on Amazon, Connor watches as his mother often feels sick or tired, is mindful about the foods she eats, and takes medications to ease her symptoms. Ultimately, he tells readers that surgery resolves some of his mother’s health issues, allowing the members of his family to spend more quality time together.

Connor Explains Crohn’s became a reality after a meeting between Lopes and Martin while Lopes was a first-year medical student at WVSOM.

“We had a lecture early on by Dr. Martin, and I could feel how passionate she was about being a pediatrician,” Lopes said. “I reached out and told her I was interested in creating a resource for children or families to learn about Crohn’s disease. Kids are curious and observant and want to know the truth, because they notice when things are different, so we wanted to create a framework for families to start having discussions and answer questions.”

Lopes created and shared her own rough sketches and corresponding text, and she and Martin developed the book together. After realizing higher-quality illustrations were needed, Martin asked Maxwell, her husband, to contribute to the project.

“We brought Scott in because he’s an artist who enjoys being creative. We gave him our storyboard, including drawings with crayon and colored pencils. He created mock-up images, then we gave him feedback and tweaked things,” Martin said.

Because Connor Explains Crohn’s is aimed at toddlers through second-graders, they ensured the text used age-appropriate language. Still, they wanted to leave room for kids to learn new terminology, Martin explained.

“Children’s vocabulary isn’t always age-dependent, and they pick up language easily. So you can use words like ‘inflammation,’ tell them what it means and then they know the word. We don’t have to dumb things down for kids; we just have to make it digestible,” she said.

Martin said Connor Explains Crohn’s — which is self-published — also can be beneficial to families without a parent experiencing chronic illness.

“Children of parents with Crohn’s disease are a niche audience. But this is a good book for any family, because it can help children learn early on that people can have different kinds of illnesses,” she said. “That way, it’s not difficult for parents to explain when they come across it in real life. A child sees someone at the beach with an ostomy bag and thinks, ‘What is that?’ If they’ve read the book, they already know.”

Watch a video about the creation of the book here.