Runner Finds Joy in Running After Overcoming Autoimmune Disorder

August 3, 2016 by Kavita Sherman, writer

Runner Finds Joy in Running After Overcoming Autoimmune Disorder

For as long as he can remember, Akron Children’s pediatric orthopedic surgeon Kerwyn Jones
has been active. In high school, he played tennis competitively, which he continued briefly into college.

“During tennis conditioning we ran a lot and looking back, I almost always liked the running part of training more than playing tennis,” he said.

In college, running became Dr. Jones’ physical fitness activity of choice. With medical school, residency and a fellowship, running was a sport he could do on his own time when it fit his schedule.

He didn’t know how much he liked running, however, until he grew weak and stiff 9 years ago and nearly lost the ability to run.

“I had little kids at the time and I couldn’t get up off the ground when we played,” Dr. Jones said. “I couldn’t run or workout. I wasn’t able to fully extend my fingers — they were stuck in a claw-like position. My hands were so weak that I couldn’t turn a screw to get it into a bone, something I needed to do to perform my job.”

Before long, he couldn’t sleep and his condition got worse.

“I had no idea what I was dealing with,” he said. “I saw my primary care doctor, but knew I needed something more. I talked to my (medical) partner, Dr. Patrick Riley, who recommended I see Dr. Mary Bratovich Toth, a pediatric rheumatologist at Children’s. She said I needed to get a muscle biopsy.”

Dr. Jones said Dr. Toth was surprised by the results. When the tests came back, they learned he had dermatomyositis, a rare autoimmune disease that causes inflammation and weakness in the muscles, a patchy purple and red skin rash, fatigue and life-threatening complications such as cancer, heart disease, lung disease and pneumonia.

While there’s no cure for dermatomyositis, its symptoms can be managed with anti-inflammatory and immunosuppressant medications, as well as intravenous gamma globulin (a donated blood product with healthy antibodies).

To treat the disease, Dr. Jones started receiving a weekly shot of methotrexate.

“I felt sick to my stomach after the shot and I felt like I had a 24-hour flu,” he said. “During that time, I wasn’t running or able to do much of anything.”

Runner Finds Joy in Running After Overcoming Autoimmune Disorder

“The best race I ever ran was in southern Utah (Moab, Utah),” said Dr. Jones, pictured with Dr. Pat Riley Jr.

After 2 years of treatment, Dr. Jones heard good news: His disease was in remission. One of the first things the self-proclaimed fitness enthusiast resumed was running.

“I was grateful to be able to go out and move again,” he said. “I felt like an iceman for 2 years. I was stiff as a board. When I finally felt well again, it was a joy to be out there (running) again.”

Since overcoming his disease in 2009, Dr. Jones began participating in marathons, ultramarathons and Tough Mudders, an extreme racing sport that involves high-intensity obstacles and adventures. An ultramarathon is any distance greater than the traditional 26.2-mile marathon race.

Over the years, he’s run in 8 marathons, 5 ultramarathons and numerous running events.

Before his illness, he typically ran on roads, but after regaining his health, he began trail running.

“I started driving every weekend to the Cuyahoga Valley National Park so I could run the trails,” Dr. Jones said. “I was kind of slow and sometimes I walked, but it’s something I enjoy doing. Now, I do ultramarathon trail races, mostly as destination races where I also visit interesting places.”

One of his most vivid memories took place during a trail marathon in Mount Tamalpais, Calif.

“We were 40 or 45 miles into a 50-mile race and had been running about 12 hours,” he said. “We looked up on a hilltop and a lone wolf was standing right in front of us. It was the coolest thing to see as the sun was going down.”

Dr. Jones has participated in the Akron Marathon Race Series, too. Sometimes he runs as part of a team relay or in the half marathon. Last year, he ran the full 26.2-mile Akron Marathon.

“It’s one of the best road races I’ve ever run,” he said. “I’ve never seen a single snafu during all the times I’ve run in it. They pump through huge numbers of people.”

Dr. Jones has several races on his bucket list, including a 100-mile race – part of the Burning River Endurance Run — that’s held in northeast Ohio. The course travels through Cuyahoga Valley National Park, the Cleveland Metroparks and the Summit Metro Parks.

“When it comes to running, a lot of people think you have to be this really good athlete,” he said. “You don’t have to be. It’s important to just get out there and move – and enjoy the places we have around us to run and hike.”

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