26.2 Miles Closer to a Cure
Emily Hinderer, Scleroderma Patient, Runs the Chicago Marathon to Fundraise For the SRF
When Emily Hinderer ran her first marathon as a senior in college, she did not know what would lie ahead. She did not know what a long, hard, slog the 26.2 miles would be, did not know the emotional and physical toll that the distance would have on her body, and certainly did not know she would ever want to do it again. According to Emily, “It was terrible. It could not have gone worse.” Somehow, though, Emily kept coming back to the running course, rain or shine, until her fifth marathon–the Bank of America Chicago Marathon of 2018–when a scleroderma diagnosis three years prior dictated that this would be her last race. But Emily is a marathoner through and through, and in her usual fashion, she decided to go out with a bang: by fundraising for the Scleroderma Research Foundation.
Emily’s story is an unusual one: the third of nine siblings, she grew up in southwest suburbs of Chicago in a big, bustling, physically active family. “I have an older sister who has four kids, and so her oldest is five or six years younger than my younger brother. So my youngest brother is closer in age to his nephew than he is to me,” Emily explains. With such an active family, it’s no surprise that Emily became a runner and athlete; she started running during her first year of college to after a friend introduced her to the idea of distance running, she was hooked. “I thought, that is totally what I want to do. I want to run the marathon. I had never done a distance race –I had never even run a 5K. I didn’t know how it was going to go, but I thought, I’m going to do it and train for it.” She ran her first full marathon her senior year of college. Running, and especially marathoning, made her a stronger, braver person–after a number of races, she went on to become an Ironman triathlete. Of that race, she says, “I loved it.”
Shortly after completing an Ironman, however, Emily started noticing some odd symptoms that had arisen during training, but that she had assumed were a result of the strenuous exercise. “My legs were so sore, my arms were so painful–no one could touch me, or give me a hug, and my parents finally said ‘Yeah, something’s wrong. You need to go to the doctor.” Emily put off going to the doctor, hoping the symptoms would go away–when they wouldn’t however, she went to her primary care physician. “I went in and basically laughed to the doctor. I said, ‘Hi, I have the weirdest symptoms.’” Emily’s doctor listened to what she told him, and ran a series of blood tests that eventually pointed towards a scleroderma diagnosis.
The road to diagnosis for Emily was pretty quick, compared to that of other patients–her sister, a nurse, immediately told her that her blood test results confirmed Scleroderma, and her doctor was relatively quick to confirm the diagnosis. Emily knew what the disease was by chance–she’d had a distant aunt who had passed away from the condition, and a friend whose mother had had to make serious changes in her lifestyle to accommodate the autoimmune disorder. “I was officially told the diagnosis on a Thursday,” says Emily, “Friday night I came home and I remember we had a Christmas tree up–and I just remember laying on the couch crying, and staring at the Christmas tree. I then went to bed, and woke up Saturday morning, and thought, you know what? I’m done.This is what it is, and I need to pick myself up and make the best of it. Just take it one day at a time.” Diagnoses for three other autoimmune disorders, as well as epilepsy, were quick to follow, and for three years, she didn’t run as often or as long as she had in the past. But Emily never gave up “I thought to myself, I’m going to use the talents that I already have to raise awareness–not just for scleroderma, but about everything I have going on. So it just became my mission to raise awareness and make a difference.” Emily says staying active in this domain has helped her process and cope with her diagnosis. “It’s been really cool and uplifting,for me to know that I’m making a difference,” she explains, “because how can we find a cure for scleroderma if nobody knows about it?”
Ultimately, the Chicago Marathon of October 2018 was momentous for a number of reasons. “It was super bittersweet,” says Emily, “It was terrible weather here–rainy and misty and cold, which, when you have Raynaud’s, isn’t great. But I felt pretty good for the whole thing.” Emily, as well as her family, knew this would be her last race–but it was also the first 26.2 mile run she’d undertaken since her diagnosis, and finishing it meant a lot to Emily, her father and sister, who were also running the race, the team she had assembled and trained with, and ultimately, the extended scleroderma community. Emily remembers a moment in the middle of the race when a race volunteer, seeing her SRF shirt, thanked her for running for the SRF, because her mother had scleroderma. “I was flabbergasted by the fact that she was thanking me,” she remembers, recalling the emotional moment, “and the fact that somebody else had it.” Emily also remembers a particularly poignant moment at the end of the race: “I just thought, ‘Oh my god. I’m doing it. I’m actually doing it.’”
Emily, her family, and her team proudly finished the race.
Being a long-distance runner and triathlete has taught Emily about more than just physical endurance–it has strengthened her mind and patience too. “I don’t give up,” she says, “And when you get that diagnosis, you can’t give up either.” When asked what she would do now, Emily responded, “I don’t know yet, I’m open to suggestions.” After a brief pause, however, she says, “But I’m going to do something.”
