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Ian Hochstetler Finds Ways to Win 

Juvenile arthritis is a family affair for the Hochstetlers — and so is giving back. 

By Jill Tyrer | May 9, 2023

When Ian Hochstetler was much younger, he tried swimming but hated it. Instead, he threw himself into soccer while his sister excelled on the swim team. Now a high school senior, Ian is co-captain of his swim team, which he helped lead to the district championships. 

Ian is an engaging, upbeat 18-year-old from a town near Akron, Ohio. In many ways he’s like other high school seniors getting ready for college. But Ian has had a harder journey than most. He was diagnosed at age 12 with juvenile idiopathic arthritis (JIA), which made him unable to walk for a while, and he spent his freshman year in a full torso brace to correct his curving spine.

He originally blamed his aching ankles and knees on playing soccer hard. “I just figured it was something that everyone went through, and it was just athlete pain,” he recalls. “Then one day it just flared up really bad.”
 
Photo credit: Sophie Sand Kannberg
Double Diagnosis

His mother, Ella Hochstetler, clearly remembers that day.

“He literally was crawling on his hands — because he couldn’t put any pressure on his knees and ankles — into our bedroom, just crying that he couldn’t walk,” she recalls. “It was really scary.”

In hindsight, there had been signs, like stomach aches — and “he just wouldn’t grow,” she says. But they never suspected arthritis. “We had no idea that this was something that could even happen to kids.”

Around the same time, a sudden growth spurt caused his spine to curve. Having to give up soccer was bad enough, Ian says. On top of that, he started high school with two new medical problems — JIA and scoliosis, for which he had to wear the brace constantly. 

“It was really bulky and plastic and it made me feel different from everyone,” he says. “I was super outgoing and really loud in middle school. I had a lot of fun with my friends. But going into freshman year, I just stayed quiet. I always asked to be [seated] in the back corner of the class. I didn’t like people sitting behind me because I didn’t want them knowing about the brace.” He wore a bulky sweatshirt every day to cover it up.

“It brings me to tears now listening to him talk about it,” his mom says. “It’s very difficult to watch your child struggle, be in pain and not be able to take it away. Also, it was extremely hard because we knew this was very likely to be a lifetime thing he was going to deal with.”

Finding Help

Fortunately, Ian quickly got the care he needed at Akron Children’s with guidance from a nurse practitioner who took the family under her arm. After trying a number of medications, he found a biologic about a year later that still has his JIA well controlled.

Since soccer was no longer an option, he reluctantly joined the swim team, knowing it would help his arthritis. With support from his older sister, Haley, he was welcomed onto the team and followed in her lane to success. “It was something that was fun but actually helped me, too,” he says.

Getting Support and Giving Back

It was the nurse practitioner at Akron Children’s who also introduced the Hochstetlers to the Arthritis Foundation. “The Arthritis Foundation was great in pointing us to resources and getting us involved in a community that was supportive,” says Ella. “We knew we had to support the cause because it truly helped him.”

They joined their local Jingle Bell Run, and their involvement grew. Ian attended JA camp the summer after his diagnosis — in spite of his reticence about “the whole camp thing.

“But when I went, it was nothing like what I thought. It was super nice, the food was amazing and the people were beyond great. It was probably the nicest group of people I’ve ever met. They were extremely supportive and accommodating. There wasn’t a single kid there my age who felt bad for themselves or wanted to sit out because they couldn’t do it,” he says. “It was definitely a life-changing experience for me.”

The Hochstetlers have continued fundraising and participating in Jingle Bell Run, where Ian was the honoree in 2022. His father, Derrick, now serves on the Foundation’s local leadership board. Ian, who got help from older kids with JA when he was younger, is now helping others. He plans to continue Jingle Bell Run and mentoring kids with JA when he’s in college.

“At the time I got diagnosed with scoliosis, it seemed like that on top of the arthritis diagnosis, I kept thinking, ‘Why me? Why was I picked?’” Ian recalls. Now, he says, “This is why I was picked, because I want to be able to help other people with [JA] now. Not many people know about this disease, so I think it’s really important to spread awareness,” he says. 

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