Living with Lyme: CNY Lyme Alliance members get personal, hoping to spread awareness

Living with Lyme

CENTRAL NEW YORK, N.Y. (WSYR-TV) — May is Lyme Disease Awareness Month and members of the Central New York Lyme Alliance are getting personal, sharing their struggles hoping to help others.

It only takes one tiny tick to change your life forever. It’s a reality Jonah Cummings lives every day.

“For me, it all started with chest pain and it was on a trip, a family vacation to Cape Cod,” said Cummings.

Cummings was an otherwise healthy teenager. His world flipped upside down in an instant.

“Brain fog and crushing fatigue and anxiety,” he said were just a few of his symptoms. He has spent years battling Lyme and is currently in rigorous treatment.

Royale Scuderi has a similar story. She’s been living with Lyme for 10 years.

It was a long, torturous journey. Misdiagnosis, a string of doctors, not much was known, a very long and complex treatment.

Royale Scuderi

Now, Scuderi is the Central New York Lyme Alliance executive director. She and Cummings are working with the rest of the team on the Alliance to make sure the community is tick aware.

“There are nearly 500,000 cases in the U.S. every year and right here in Central New York, the cases have grown 439 percent from 2008 to 2018.”

royale scuderi

It’s a real danger and Central New York is a hot spot. So the CNY Lyme Alliance is working with doctors, Lyme warriors, and researchers to connect the dots so more people will know how to protect themselves and will know what to do when they find a tick.

“My hope is in that, that we can educate people, educate healthcare providers because I don’t want anyone to have to go through what I went through,” Scuderi said.

Check yourself, most importantly, every time you come back in from an outdoor activity for those ticks.

Jonah Cummings

For those who are fighting Lyme, the CNY Lyme Alliance wants you to know, there’s always hope.

“I want them [Lyme warriors] to know that they’re not alone and they should never stop pursuing answers and never be afraid to ask for help.”

jonah cummings

To learn more about Lyme, tick-borne diseases, prevention, and treatment visit the CNY Lyme Alliance. Follow them on Twitter, Instagram, and Facebook.

Copyright 2021 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

Early Voting Info for the 2021 Primary

Live Doppler 9 Map Center

CNY View

CNY View

CNY View

Oswego Area

Oswego Area

Syracuse Area

Syracuse Area