Student’s newly established nonprofit aims to serve chronically ill teens

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Madeline Shonka stands in front of the castle at Disney World with her medals from running a 5k, 10k, and half marathon for three consecutive days.

Oscillating between purposeful speech and a self-deprecating laugh, Madeline Shonka doesn’t take herself too seriously, although you should.

The Wichita State junior works full-time at Mercy Children’s Hospital, studies health management, and is in the process of founding a nonprofit organization.

There’s more to Shonka than meets the eye, however.

“I’ve been chronically ill my whole life,” Shonka said. “Pneumonia eight times by the time I was three. By sixth grade, I developed the symptoms of lupus, which I was diagnosed with as well as narcolepsy with catalepsy my senior year of high school, and since then, I’ve been managing those, which is a big part of my life.”

Since birth, Shonka has been in and out of hospitals due to her chronic illnesses, which have also included swine flu and mono. She ultimately ended up in a Mayo Clinic with her diagnoses of lupus and narcolepsy with catalepsy.

Lupus is an autoimmune disease that causes the body to attack itself with inflammation. Shonka’s skin, joints, and organs have been affected by the disease, at times leaving her bed-ridden. Narcolepsy is a sleep disorder that leaves unmedicated patients feeling like they’ve been awake for 72 hours. Catalepsy means that when Shonka experiences strong emotions or pain, her muscles can malfunction, varying in severity from a slack jaw to total body collapse.

Shonka doesn’t dwell on the negative, though. A cheerful radiance permeates her, even as she speaks candidly about her experiences as a chronically ill person.

“It never seemed abnormal to me, because being sick was all I’d ever known,” Shonka said. “I have a very dry sense of humor and I’ve noticed that people are receptive when you’re talking about things that are normal in your life light-heartedly, and allowing them to join in that conversation, it makes it more approachable and less scary.”

Shonka is confident and self-assured now, but getting there was a journey. Her years before college presented a special challenge.

“When you look at me, it is not apparent that I have a disability,” Shonka said. “I can disguise myself as normal if I am not symptomatic, but with invisible illnesses, people tend not to believe the severity of your situation. So going through middle school and high school, it’s very hard for kids to relate to students who are going through that. You feel crazy with chronic illness.”

This experience motivated Shonka to pursue a career as an advocate.

Her nonprofit organization, The Co-Immunity Foundation, was approved for 501c3 status last week. This milestone is a long time coming. Shonka interviewed over 20 medical practitioners and conducted survey research of nearly 250 college students with chronic illnesses to determine the needs of those she wanted to help.

Shonka funds the endeavor herself.

“You have to work full-time to fund a nonprofit,” Shonka said. “We have a lot of potential investors, but you have to get to a point where you have a polished enough presentation to secure those investments, and that takes an upfront monetary cost.”

The Co-Immunity Foundation is meant to address a major gap in chronic illness care. Shonka says the majority of resources currently available are geared towards small children and adults — leaving teenagers reliant on scarcely available support groups.

Research, including Shonka’s, suggests that many chronically ill people internalize stress, thereby worsening their conditions.

Shonka plans to provide space and resources to alleviate stress among chronically ill teenagers with the larger goal of improving patient outcomes.

Despite her ambition, Shonka is not all work.

Since her diagnosis with lupus, Shonka has ran races, starting with a half marathon, at Disney World.

Her mother encouraged her to run the race in what Shonka calls “dangling the carrot.” A sedentary lifestyle can quicken the onset of arthritic symptoms in those with lupus, hence the running regimen.

To celebrate her one year of remission from lupus, Shonka ran a 5k, a 10k, and a half marathon on three consecutive days at Disney World.

The best part?

“The medals are badass,” she said.