If you have never heard of Charcot-Marie-Tooth disease (CMT), you are not alone. Named after the first three doctors to identify it, the CMT Association describes the disease as affecting muscle control along with the nerves outside the brain and spinal cord. 

It affects 133,000 people in the United States, and roughly 3 million people worldwide, according to the CMT Association.

One woman is starting a cycling event to create a greater understanding of how the most inherited condition affects patients. 

To help build that awareness, Kelsy Komyathy started Raleigh’s Cycle4CMT event. The first ride will be held at one of the city’s most well-known parks.

“I have been riding at Anderson Point Park since I started cycling in June of 2022. I knew this would be a great place to host it. It’s super inclusive, it’s super friendly for riders of all abilities,” Komyathy said.

Nothing tops being on a bike for Komyathy.

“The endorphins on a bike are great. Whenever I’m in a bad mood, I can brighten my day on a bike,” she added.

Since the summer of 2022, cycling has been her favorite obsession. These days, she says she can easily ride mile after mile.

“I feel strong. I feel free,” she said.

On her bicycle, the 29-year-old said she feels like the best version of herself as she deals with her disease.

“CMT is something I have struggled with for a long time and I feel like up until probably about four years ago, I wanted to hide it. I hated myself. I hated what I couldn’t do and then I find cycling, and it helped me focus on what I could do, and that I can love life and that I can move, and that I can move fast,” Komyathy said.

CMT is a rare, progressively degenerative condition affecting multiple aspects of a person’s life.

“It’s hard. It hurts. (I) just wanna be normal and when you find something like cycling that makes you feel normal, it’s great to have that break but it does get exhausting explaining yourself,” Komyathy said.

She showed how her hand and foot movements are more difficult when she’s not on two wheels. 

However, it doesn’t mean she can’t enjoy a good quality of life. Komyathy said just because the disease affects her muscles, it doesn’t mean she can’t enjoy everyday delights like a backyard game of fetch with her rescue dog, Lexi.

“Some days, I have a little more strength than others. Some days, I can hide it really well. Some days, I can’t. But on days like today, when the weather is really nice, and it is early in the morning, I usually can function a little bit better. As I get more tired throughout the day, things start to change,” Komyathy said.

Because Komyathy’s extremities don’t consistently register all bodily sensations, many times she views what’s directly in front of her step-by-step.

”I kind of look down to make sure I am not going to trip on whatever is in front of me,” she said.

Muscular atrophy, spasms and equilibrium issues are all common side effects.

“I choose to have my good days and live my good days as best as I can, and when I have bad days, that’s OK too, but you have to get through them,” she said.

With such a rare condition affecting the smallest of tasks in her day-to-day life, she said having a reliable sidekick like her boyfriend, Jimmy Skinner, is important.

“Jimmy biking with me has been awesome. He’s very supportive, and he reminds me that it’s OK to slow down when I get tired and take a break,” Komyathy said.

Komyathy platforms her journey with the rare disease by rolling out her love for cycling on social media.

Her introduction to bike riding as an exercise or leisurely activity lead her to the northeast, where she rode in the annual Vermont Cycle 4 CMT last September.

She said that experiencing so much acceptance and comradery felt amazing. “Everyone just got it. They understood that life presents with challenges than most people and you didn’t have to explain yourself. You just felt understood,” Komyathy said.

“It’s very frustrating but we’re all dealt a hand, and it’s our job to do with it what we want to,” Komyathy said.

Komyathy is participating in Phase Three clinical trial testing for STAR CMT research. STAR, which stands for Strategy to Accelerate Research, is a CMT Association endeavor that recruits large amounts of patients.

She has taken medication twice a day, every day, for the last year as part of this trial. Komyathy said the medication is showing promising signs of slowing down the effects of the disease—which is important to ensuring a good quality of life as she grows older.

Raleigh’s Cycle4CMT is set for Oct. 23 at 10 a.m. in Anderson Point Park.