Kansas couple starts group for those with Lyme disease
Tuesday, May 16, 2017
Emporia For almost five years, Nikki DiSalvo only knew she was sick.
Suffering from seemingly unrelated symptoms ranging from fatigue, visual disturbances and digestive issues to cardiovascular and neurological issues, DiSalvo received an equally broad range of diagnoses. Lupus, multiple sclerosis and a panic disorder — each was a false description before DiSalvo learned the true name of her illness in November 2015.
The Emporia Gazette reports that Lyme disease, caused by bacteria carried by ticks, was to blame for each of DiSalvo’s symptoms.
“When she called back and said the Lyme test was positive, I think I was really surprised,” DiSalvo, a graduate student at Emporia State University, said. “There was an element of relief that we finally knew what was going on.”
DiSalvo can’t recall exactly when she was bitten by a tick, but imagines it was during one of the many rounds of disc golf she and her husband, Derek Savory, played in upstate New York. Going from being able to play multiple rounds in a day, DiSalvo said making it through one round is an achievement.
“Now I congratulate myself if I get through a round without having to be carried off the course,” she said.
Looking to educate others and increase awareness of Lyme disease, DiSalvo and Savory started Lyme Warrior Disc Golf.
“Not a lot of people know about Lyme disease,” Savory said. “Maybe they remember seeing a commercial for it, but nobody really knows what it is. They say, ‘Oh, it’s Lyme disease,’ and they walk away. We were ignorant of it as well when we first got into it.
“So to get people talking about it in disc golf — because disc golfers are a group of people who have a high risk for it — if you keep repeating ‘Be careful of ticks, be careful of ticks,’ it becomes background noise.”
In an effort to craft a memorable message, the organization commissions a different artist each month to design a custom Lyme Warrior disc.
“When people see that they say, ‘Oh, what is that? Where did it come from?’” Savory said. “Hopefully the people who purchase these discs will talk about it, or they’ll see it on Facebook and talk about it and they’ll get some information that sticks with them.”
The organization also distributes cards reminding disc golfers of the proper way to remove ticks and ways to avoid Lyme disease.
“During the (Glass Blown Open) we had a gentleman come up to us and he had a tick on his leg and it was developing a rash around it,” Savory said. “Since we were there, we were able to give him the information on how to remove it properly and the signs and symptoms to look out for.”
Amanda Dreasher, medical clinic manager at Flint Hills Community Health Center, said both humans and animals can contract Lyme disease. One of the most common indicators of Lyme disease is a bull’s-eye-shaped rash developing around the bite area.
“It means you’ll have a small, red area then a clear area around it then another reddened area, so it kind of looks like a bull’s-eye,” Dreasher said.
According to Dreasher, ticks like to settle in crevices, like armpits or behind the knees, on the human body. Applying insect repellent and wearing longer sleeves is a way to discourage ticks from biting.
“Have someone check, especially if you’ve been walking through high grass or under trees,” she said. “I’d recommend having someone help you look for ticks on your body. Some of them can be very small.”
Today, Lyme Warrior Disc Golf is holding the Lyme Warrior Open Disc Golf Tournament at Jones Park.
“The idea came from JD Chanley (a teacher at North Lyon County Junior High School in Americus),” Savory said. “He said, ‘I want to hold a fundraiser for you guys,’ and asked me for a little bit of help because I’ve been running tournaments for the last five or six years.”
With an entry fee of $25 per person, the tournament features categories for all ages and skill levels. Money raised will go toward raising awareness of Lyme disease through Lyme Warrior.
“It’s a bring-your-own partner event,” Savory said.
The Facebook page for Lyme Warrior Disc Golf can be found at facebook.com/lymewarriordg/.
DiSalvo also has a blog where she chronicles her life with Lyme disease. There is also a GoFundMe page set up to help with DiSalvo’s medical expenses.