GRAND RAPIDS, Mich. (WOOD) — A man fighting an extremely rare neurological disorder is using the largest 25K road race in the world to get back in the game.
Some 17,000 people are expected to participate in the Fifth Third River Bank Run in Grand Rapids on Saturday.
Rob Swartz, of Boyne City, will be among those running the 25K. He has chronic microglial encephalomyelitis.
“Chronic,” he said. “Lifelong. I’ll fight this every day the rest of my life.”
In 2010, Swartz entered his first triathlon. The next year, he completed 13 triathlons, a 100-mile bike race and a full marathon.
But one morning in February 2012, he woke up lightheaded. The symptoms soon worsened — vertigo, bouts of severe trembling in his hands and feet, and tunnel vision that caused occasional temporary blindness.
“My immune system that normally is going to protect me from a bacteria, a virus, getting sick, instead turned on my own body and started to attack my brain and spinal cord,” Swartz said.
In March, he went to the Mayo Clinic in Minnesota to find out what was going on.
“Was this a disease that was going to kill me slowly? Was it something we could treat? At that point, I still didn’t know,” he said.
Doctors said the only way to determine that was to conduct a brain biopsy.
“Sitting in the hospital waiting for the doctors to come out and say the biopsy was done, seeing him in neurological ICU, it’s terrifying,” his wife, Danielle Swartz, recalled.
Swartz was diagnosed with chronic microglial encephalomyelitis — a condition so rare that he is only the seventh patient ever to be diagnosed with it.
“I thought I was going to die. I expected it. I took a very deep breath and looked back at [the doctor] and asked, ‘How long do I have?'” he said.
But there was good news. The condition was treatable. Steroid injections and immunosuppressive drugs curbed the inflammation. Still, he had to use a walker for several months before he was able to walk again on his own.
But he was determined to get back in the race. The very first day after his procedure, he got to work.
“How many laps around the nurses station will it take to get a mile? Because I’m going to beat this and I’m going to get back to a triathlon again,” Swartz said.
The road was a bumpy one. In the year after the biopsy, he relapsed twice.
Since then, his doctors have found a dose of daily immunosuppression high enough to manage the disease. Swartz has been stable for a little over a year and a half.
He has even laced up the running shoes, training for the River Bank Run 25K. It will be his first time back in the event since 2011 and his longest race since he was diagnosed.
“It’ll be run for three to four minutes, take a break and walk for one,” Swartz said.
“I’ve been at the finish line for a lot of races for him and they’re all extremely special to me, but especially this one because of where we’ve been since the last time that he crossed this finish line for this race. It’s huge,” his wife said.
“It’s that same feeling you get in running a marathon when you’re in the 20-mile mark and going, ‘Uh-oh, I’ve hit a wall. What am I going to do?’ But you get through it,” Swartz said.
Swartz will run as part of Team Lucky Seven — a nonprofit he started to raise money for research of neurological diseases. He named the organization for being the seventh person diagnosed with chronic microglial encephalomyelitis.