Madalynn Shanks is an actress, singer, creative writer and aspiring filmmaker. At 14, she is driven and confident. She always was eager to talk about story ideas or the latest character she dreamed up. But now she is also eager to talk about a disease that has changed her life.
Madalynn was diagnosed with ulcerative colitis in 2015. It is not an easy thing for a person her age to discuss. But she took it on like she takes on most things. She has sought to raise awareness about inflammatory bowel disease (IBD) and challenges kids and teenagers face. Those challenges may be the discomfort of making frequent trips to the school restroom or dealing with gossip and sometimes laughter of classmates.
“People are embarrassed about it and I just want to help them not feel that way,” Madalynn said on a recent morning, seated next to her mother, Melissa, at a favorite café near their Jackson Township home.
“So many people are out there like me. They’re in middle school and they’re embarrassed. They don’t want anyone to know.”
Madalynn and her mother pushed for and received permission from the Crohn’s and Colitis Foundation to form a support group for kids. Formed in 2017, the group holds sessions for kids, adults and caregivers the first Thursday of each month at The Chapel in Green, located in Uniontown.
Madalynn developed symptoms of colitis over six months in 2015, but at first she tended to brush off symptoms.
“She has a high tolerance for pain,” Melissa said. “She’s very optimistic, so she would say, ‘I have a belly ache, but it’s okay.’ She kind of got used to feeling bad.”
But her appetite waned, fatigue set in, she was losing weight and found blood in her stool. A colonoscopy at Akron Children’s Hospital confirmed ulcerative colitis. Inflammatory bowel diseases such as colitis are caused by an abnormal immune response in the GI tract.
Pediatric gastroenterologist Dr. Sivart Kassabian immediately put Madalynn on IV medications to control the disease and repress her immune response. Madalynn started feeling better in about a week. Her appetite and color came back, Melissa said. But she missed 60 days of school that year.
“People in school acted like I was a zombie,” Madalynn said. “In sixth grade, someone started a rumor that I died when I was sick for a week. It spread to a lot of people. They know you missed a lot of school and you don’t look good. I was like, ‘Here I am.’”
The summer after her diagnosis, Madalynn went to the foundation’s Camp Oasis. She found how many kids were just like her, and it inspired her to form the support group.
She’s been in remission for 6 months and has only missed a couple days of school this year. She said she feels good. But she struggles, her mother said, with fatigue, lifestyle changes and mental stress.
“It’s been hard this year. She’s had a little depression, but she keeps going. She has such big career goals. She tries to stay focused.”
Madalynn puts her energy into school and her artistic endeavors. She creates superhero characters – 7 of them, so far – including a character named Titanium X – “loosely based on me, except she’s a lot more serious than me.” She writes plots and scripts, appeared in a film short and plans to go to film camp this summer.
Besides her work with the support group, she helps with foundation’s Take Steps fundraising walk in Akron.
“I just want people to know they’re not alone,” she said. “When I first was diagnosed, I wondered how many people have it. I had never heard of it.”