WEST SENECA, N.Y. — As a Lyme disease vaccine is in its final clinical trial, a local couple that's been living with the illness for nearly a decade has made it their mission to help others.
Chuk and Rebecca Roll of West Seneca are high school sweethearts, who have now been married 18 years with two beautiful daughters. But nine years ago their lives were forever changed when Chuk, the owner of a landscaping business, started experiencing a very high fever and flu-like symptoms.
"I kept calling the doctors and we were just continuously dismissed. They just didn't feel like at the time that it was a problem in this county and that there was no way he could have Lyme disease. He never saw a tick on him. He never had the classic bullseye rash. So how could this be," said Rebecca, a first grade teacher in the Maryvale School District. "We were told it was anything from lupus to cancer to fibromyalgia to chronic fatigue syndrome. The list goes on and on. Finally we were told he had something called reactive arthritis and it just didn't sound right."
So Rebecca and Chuk advocated for themselves and demanded more testing, and eight weeks later it was confirmed that Chuk had the tick-borne illness of which there is no cure.
"At the time we were relieved because it was finally a diagnosis," said Rebecca. "We didn't realize that was the beginning of our nightmare."
Once a month for four years Chuk drove to Pennsylvania for the antibiotics and the treatment he needed.
"My quality of life was almost nothing. There were periods of my life I almost don't remember. I always tell people it was like I had horse-blinders on. I could only focus on one thing. The brain fog was bad. I was losing my vision. 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.
Chuk and Rebecca said when it comes to Lyme disease, you just don't get it, until you get it.
"When Chuk was first sick I was desperate to find somebody else who had Lyme to help us get through this journey because it was very, very lonely," said Rebecca.
So in 2016 they created the nonprofit Lyme WNY which was essentially the support system they never had for themselves.
"We said what can we do that we didn't have," Rebecca said. "We're just a small little group. Every penny that goes to our organization goes right back to the people in our community to help them navigate this journey."
They teach about Lyme prevention in local schools, spread awareness at events, raise funds to provide grants to patients since insurance doesn't cover Lyme doctors or long-term treatment, and their support group meets once a month at the East Seneca Fire Company.
The Rolls have helped thousands physically and emotionally deal with a disease that is often misunderstood.
"To sit back and do nothing, I don't want to leave this earth knowing I did nothing. I want to leave knowing that we helped others," said Rebecca. "I've had people come who I haven't even known who wrap their arms around me and say, 'You've 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 right there that a reward in itself."
Chuk said it feels good to help, but they wouldn't be able to 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.
As for the vaccine, the Rolls said they're remaining cautiously optimistic until more is known.
Physically, Chuk said he is feeling 90 percent better thanks to a change in his diet, but he knows this is a disease that he will live with the rest of his life.
If you'd like to learn more, or have questions about the disease or the Roll family's journey, reach them by emailing contactus@lymewny.com
Visit their Facebook page here.
Visit their website here.
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