Kevin Moffat has always been active and hardworking. A high school rower turned high-achieving electrical engineer, he’s continuously put forth his best efforts in order to achieve his goals. And then, suddenly, the fast-paced energy that propelled him seemed to evaporate overnight.  

“I started to notice my energy levels decreasing, even with normal, everyday tasks,” he said. “It was like everything started to slow down, but I wrote it off because I was getting older.”  

In 2006, at the age of 19, Kevin had been diagnosed with Crohn’s disease, a chronic inflammatory bowel disease. In the ten years since this diagnosis, however, his Crohn’s symptoms were mostly controlled with medication. But what had been a small worry on a single MRI during that diagnosis process soon became a much bigger concern.  

“Starting about three years ago, my Crohn’s grew out of control; I had a flare last for six months, and I was so exhausted that I could barely even get out of bed some days,” he said. “I started to get these random fevers and a 104 fever finally sent me to the emergency room. I was admitted for three days, and one of the tests they ran was an MRI. They noticed that my bile duct strictures were much worse than they were when I was first diagnosed with Crohn’s.”  

Soon after, Kevin was diagnosed with primary sclerosing cholangitis (PSC), a chronic and progressive disease affecting the bile duct system. This duo of invisible illnesses continue to impact his daily experiences today.  

“The problem is that the Crohn’s and PSC go hand in hand. I’ve noticed that if I get a Crohn’s flare, I’ll typically get fevers from the PSC either right before or right after it,” Kevin said. “It’s debilitating and it’s unexpected and it affects a lot of my life. There are still plenty of nights where I have to cancel plans with friends or family because I’m just too exhausted or feeling ill to get out of bed.”

This same chronic illness exhaustion – coupled with the fevers and itching – impacts Kevin’s professional life, too.  

“There are plenty of days where people rely on me to be in the office and I simply can’t. I don’t want them to think that I’m lazy and that’s why I’m working remotely,” he said. “I did end up telling my supervisor and coworkers about my PSC, just because I wanted that level of understanding from them. But at the end of the day, it makes me feel bad. It makes me feel incompetent at my job even though I know, if I didn’t have PSC, I’d be more than capable of doing all of this.”  

Both Kevin’s professional and personal relationships are impacted by other lifestyle modifications he’s had to make for the sake of his health.  

“My work culture includes team building activities such as happy hours after work.  It’s the same with a lot of my friends: They like to go out to dinner, or occasionally for drinks, and that was a perfectly normal activity for all of us in the past,” he said. “So while everyone is drinking and having fun, it’s challenging to engage and feel part of the group sometimes when I’m not feeling well. It requires you to change your mindset, to find activities that I can do and enjoy, but even then I feel like I’m separating myself from my friend groups.”

Thankfully, Kevin’s wife, Syndia, plays a significant role in his support system. Whether she’s encouraging him to take their dog for walks to increase Kevin’s physical activity, or supporting various diet modifications, he says that she’s the most understanding and most supportive person in his life.  

Still, their relationship is also impacted by PSC and Crohn’s.  

“For years, we’ve talked about having kids. But it’s a two person job to raise kids, and it concerns me that I’m not going to have the energy to fully participate,” he said. “There are a lot of complications that loom over us and concern us because of my health. I want to be a proactive parent, and I want to pick up any slack because my wife has a very stressful job, but I just don’t know if I’d be able to.”   

Through everything, Kevin’s doctors have been immensely supportive and are proactive about finding clinical trials he can participate in. Kevin’s also turned to Facebook groups for support and camaraderie from other people who have PSC.  

“In a weird sense, it’s good to know that other people are going through the same things, that it’s not just me,” he said. “It’s nice to share that with others because there are so many people who don’t understand it, who think I feel fine because I don’t look sick on the outside.”

Now 36-years-old, Kevin is teaching himself to play the piano and restoring an old car. At work, he’s keeping his eye on a career-long goal. He’s also looking ahead to what the future might hold.  

“I think the worst part about PSC is the unknown of it. At the end of the day, we don’t know exactly when I’ll need a liver transplant. It could be two years, and it could be fifteen. What if we have a newborn and then find out I need a liver transplant?” he said. “So I’d like to see something come from clinical trials, whether it’s a cure or a better suppressant for our symptoms. It’s a lot to deal with, but we’re all still looking for a reason to hope.”