Chuk Roll was diagnosed with a tick-borne disease in 2013. At the time, he and his wife felt they had little support. They are on a mission to change that.
WEST SENECA, NY – As a Lyme disease vaccine enters its final clinical trial, a local couple who have lived with the disease for nearly a decade have made it their mission to help others.
West Seneca’s Chuk and Rebecca Roll are high school sweethearts, who have now been married for 18 years and have two beautiful daughters. But nine years ago, their lives changed forever when Chuk, the owner of a landscaping company, started having a very high fever and flu-like symptoms.
“I kept calling the doctors and we were continually being fired. They just didn’t feel at the time that it was a problem in that county and there was no way that he could have Lyme disease. He’s never seen a tick on him. He’s never had the classic rash on his face. So how is that possible,” said Rebecca, a teacher freshman from the Maryvale School District. “We were told it was anything from lupus to cancer to fibromyalgia and chronic fatigue syndrome. The list goes on and on. Eventually we were told that he had something called reactive arthritis and it didn’t sound good.”
So Rebecca and Chuk fought back and demanded more tests, and eight weeks later Chuk was confirmed to have the tick-borne disease for which there is no cure.
“At the time, we were relieved because it was finally diagnosed,” Rebecca said. “We didn’t realize this was the start of our nightmare.”
Once a month for four years, Chuk traveled to Pennsylvania for the antibiotics and treatment he needed.
“My quality of life was next to zero. There were times in my life that I hardly remember. I always tell people it was like I had blinders on. I could only focus on one thing. The brain fog was bad. I was losing my sight. The joint pain was extremely bad. Extreme headaches. It’s a very depressing disease. And lonely, because no one understands what you’re going through,” said Chuk said.
Chuk and Rebecca said when it comes to Lyme disease, you don’t get it until you get it.
“When Chuk first got sick, I was desperate to find someone else who had Lyme to help us through this journey because it was very, very lonely,” Rebecca said.
So in 2016, they started the nonprofit Lyme WNY, which was basically the support system they never had for themselves.
“We said what we could do that we didn’t,” Rebecca said. “We are just a small group. Every penny that goes to our organization goes directly to people in our community to help them navigate this journey.”
They teach Lyme prevention in local schools, raise awareness at events, raise money for patient grants since insurance doesn’t cover Lyme doctors or long-term treatments, and their group of support meets once a month at the East Seneca Fire Company.
The Rolls have helped thousands physically and emotionally cope with an often misunderstood disease.
“To sit and do nothing, I don’t want to leave this earth knowing that I did nothing. I want to leave knowing that we helped others,” Rebecca said. “I’ve had people I didn’t even know hug me and say, ‘You saved my daughter’s life.’ Or, ‘If it wasn’t for your husband or your organization, I don’t know where I would be right now. So I think that’s a reward in itself.”
Chuk said it feels good to help, but they couldn’t do it without support.
“Lyme WNY wouldn’t exist without the support of the community, friends and family, board members, and we want to thank them for making it possible to help others,” he said. he declares.
As for the vaccine, the Rolls said they remain cautiously optimistic until more is known.
Physically, Chuk said he felt 90% better thanks to a change in his diet, but he knows this is an illness he will live with for the rest of his life.
If you would like to know more or have any questions about the disease or the Roll family journey, contact them by emailing [email protected]
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