I really want more people to know about FND because it’s really hard when you have to go through it alone.”

Katie Kirwin

Colt State Park
Bristol, R
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The teenage years are difficult to navigate for the average young person. Add a neurological disorder, and they’re difficult at a whole new level.

That’s where Katie Kirwin found herself two years ago. She was 14 when she was diagnosed with functional neurological disorder in January of 2023 — functional being the key word. 

With the hustle and bustle of homeschool life in Rhode Island, Kirwin was always on the move before her diagnosis. “I went to co-op classes, my bowling league, youth group, figure skating, and I even had a job at McDonald’s — and then everything just stopped,” she shared.

Kirwin, who lives in a small apartment in Bristol on the second floor, shares a room with her rambunctious white and brown patched bunny named Bella, who has been her companion throughout her struggles. She stroked Bella and shared her experience with FND.

“First, I got sick with COVID,” she said. “I started having seizures, and when COVID went away, I was still having seizures. I woke up one day and couldn’t move my legs,” Kirwin recalled.

The disorder seemed to creep in overnight — as it often does — changing everything for Kirwin.

Kirwin shared, “The neurologist who diagnosed me said, ‘Katie, you have FND,’ and I just looked at her and asked, ‘What on earth is that?’ ” And with that, everything for Kirwin changed, drastically.

She explained the diagnosis, saying, “Even though there’s nothing physically wrong with the brain, it sends signals that don’t get received, so it can cause difficulty with walking, talking, and even seeing. Basically, the brain doesn’t work with the body anymore.” 

Kirwin began treatment at Hasbro’s partial day program — something that started with a wave of resistance. 

“I was adamant about not going because I was a very independent person. I was fourteen, in high school and already had a job. Even though I was having these symptoms, I thought, ‘I’m not just going to quit my job, quit my bowling league, and stop my life,’ ” Kirwin divulged. But she quickly realized she couldn’t live life with the symptoms and began the day program.

Two weeks into it, she told her mom she wouldn’t be able to go. “I woke up one day and my legs weren’t working, so, I said, ‘I’m not going. I can’t feel my legs.’ ” Her apartment was on the third floor at the time and she couldn’t imagine how she would be able to get to the program, but the program insisted she come.

“The remarkable thing is that my aunts came by and actually carried me to the car so I could get there,” Kirwin shared. She smiled and said, “I’m lucky to have a strong, supportive family like this, and I would not be able to do what I’m doing today without that program, so I’m glad they forced me.” 

Learning to unwind

Because there’s no cure for FND, teaching patients how to manage symptoms is the key to living a fulfilling life. Kirwin said, “What I needed to learn most was to slow down, to take care of my body and mind before anything else; it was hard to learn this.” 

She also shared, “I lost friends and family throughout the process.” She attributed this to needing to step back from her usual activities, to some not understanding her disorder, and to others not fully believing it exists. 

“With FND, it’s really hard because some people think you should just be able to get over it. They see it as a mental thing, like anxiety, and think it’s simple to just get over it,” shared Kirwin.

She also attributes her loneliness to not being able to keep up the pace of her friends’ lives. “I missed out on things they were doing because I couldn’t keep up anymore” she admitted.

She found comfort and companionship at home in her bedroom with Bella cuddled up by her side, even found lying on her during her worst FND symptoms — learning to cope, learning to move slowly, yet functionally.

But she also found hope and understanding through FND Hope — an international organization connecting people with the disorder. Kirwin explained, “I wanted to feel like I wasn’t alone, because FND isn’t common. I was normal before, and now I’m not. It helped me not feel like a freak.”

“Though I lost friends, I’ve found my real friends,” Kirwin said with a big smile. “When you have good friends like I do now, they make sure you’re not left behind,” she continued.

Her connection to others with FND gave her another outlet to pour her energy into. When she couldn’t attend a fundraiser for FND, as the closest one was in Florida, she decided to start one of her own. She said, “I’m a go-getter, so I thought, ‘I’ll just start one of my own.’ ” She reached out to the organizers of FND Hope and asked if she could host a fundraiser — and it’s now in its second year. Kirwin’s biggest reason for hosting it comes from her wish for the disorder to be recognized and more understood.

She shared, “I really want more people to know about FND, because it’s really hard when you have to go through it alone.” 

Kirwin is inviting everyone to show up to her Zumbathon event happening on May 4 at the Bristol Parks Recreation Center — just a few days after she turns 17. But her devotion to the cause doesn’t stop there.

When asked about her future, she said she plans to apply to colleges over the summer — and her ultimate goal is to become a neurologist so she can help others navigate FND and other neurological conditions. 

“And I’ll be bringing Bella with me to my dorm as an emotional support pet,” she said with a grin, referring to her beloved bunny. “She gives me the strength I need to learn to slow down.”

EDITOR’S NOTE

The Zumbathon fundraiser will be held on Sunday, May 4, from 11 a.m. to 12:15 p.m. at the Bristol Parks Recreation Center found near the main entrance of Colt State Park — 101 Asylum Road. All donations will go to FND Hope, an organization dedicated to providing support to those with FND, building awareness, and advancing research. There will be raffles.