Taking back control of my life from the vice grip of Huntington’s

Erik Barrett runs his first marathon on the highways of Manitoba, Canada, in 2020. (Photos courtesy of Erik Barrett)

This is Erik Barrett’s story:

I wear many hats, whether it’s being a caring family member, a cheerleader to my friends, or an ultramarathon-running Huntington’s disease advocate. It’s easy for people to see me now and think I’ve always been this way, but the truth is that I wasn’t always like this. It was an arduous journey to get here, one that can’t be told without mentioning Huntington’s disease.

I grew up in Minnedosa, Manitoba, your run-of-the-mill Canadian farm town with a tight-knit community. Learning about my dad’s Huntington’s disease diagnosis when I was 14 was a lot to process. Despite how well my parents supported my brother and me after delivering the news, I still struggled to understand what this meant for me, my family, and our future.

Being the ignorant ninth grader that I was, I figured I’d avoid Huntington’s until I was old enough to receive genetic testing at the age of 18. The funny thing about Huntington’s is that you can’t really ignore it. I wasn’t aware of it at the time, but Huntington’s weighed heavily on my mental health, and I spent most of my high school years finding new ways to get into trouble. I built an impressive list of reasons my parents should worry about me: suspensions, vaping, and excessive drinking. Somehow, I still graduated in good standing, but looking into my future, I knew I had to break the cycle.

Barrett crosses the finish line during his first ultramarathon in 2023 to raise money for the Huntington Society of Canada.

Carrying the burden of Huntington’s alone was like a heavy, wet blanket on my mental health. My family was always there to support me, but I felt I needed to do something — anything — to help me take the power away from the disease. I thought running a marathon to fundraise for Huntington’s was the hardest thing I could think of doing at the time, so I spent that summer learning how to train for a marathon while running on Manitoba’s back roads.

I spoke with friends and others in my town to raise awareness about HD and funds for the Huntington Society of Canada. That was one of the most fulfilling and memorable periods of my life. Every mile I ran and every door I knocked on helped empower me to take back my life from Huntington’s vice grip. I can still recall every step of that first marathon: the cool air on my skin, the smell of diesel trucks passing me on the highway, and the feeling of my entire community cheering me on as I ran to the neighboring town.

For me, Huntington’s and running have always been intertwined and inseparable. The farther I ran, the more I could face my fears. Running turned out to be remarkably therapeutic in helping me deal with the intense emotions Huntington’s disease causes.

When I traded my hometown for the University of Calgary, I struggled again with bearing the weight of Huntington’s. I remember thinking, “If you can run a marathon, you can tell your closest friend about Huntington’s.” Over time, that mindset has had a snowball effect and grows with every new challenge I seek and accomplish, whether it’s becoming an HDYO Ambassador so I could help other young people like me, or raising $1,500 for HDYO by running more than 140 kilometers during 21 consecutive hours to be the last man standing in the 2024 Prairie Nightmare Backyard Ultra — an accomplishment I never would’ve dreamed possible five years ago.

In many ways, my journey with Huntington’s has been my longest race yet, but this one doesn’t have a finish line. I don’t know exactly where it will take me, but I know that just like every big challenge, it’ll be a lot easier now that I have such incredible communities supporting me, whether it’s my hometown, my Calgary family, or the Huntington’s family that helped lift that wet blanket off me.

Huntington’s disease can be cruel and relentless, but I am still excited and hopeful about my future, the future of my family and friends, and the future of the Huntington’s community.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #HDSpotlight, or read the full series.