Four years ago when Michele Cassetori’s daughter found a bulls-eye rash on her ankle, she didn’t think there was any reason to be concerned.
The rash was the result of a tick bite, and the following year, Cassetori’s daughter, Camryn, who was 12 at the time, started to experience symptoms such as headaches, fatigue, swollen joints and eventually the muscle in her leg atrophied.
The symptoms culminated with a Lyme disease diagnosis that Cassetori feels could’ve been avoided had her daughter been aware of the threat posed by that bulls-eye rash.
“She didn’t tell us,” Cassetori, of Plains, said. “She was 12 and she didn’t know it meant anything.”
Today, Cassetori wants everyone to know that a bulls-eye rash means a lot, and there are ways to reduce the risk of being bitten by a tick.
This week, Cassetori successfully lobbied the Luzerne County Council to issue a proclamation declaring May as Lyme Disease Awareness Month. The move comes days after a similar proclamation issued by the state, and Cassetori believes both measures will help to get the word out about the risk posed by ticks.
And the timing couldn’t be better.
“It’s tick season and we’re expecting a significant increase in ticks this summer,” said Cassetori, who is the NEPA Regional Leader of the PA Lyme Resource Network.
Despite the threat, Cassetori says people shouldn’t be apprehensive about going outside but they need to protect themselves against ticks.
“We live in a beautiful state with so many great things to do outdoors,” she said. “We have no choice but to coexist with ticks, so we need to take steps to reduce the risk.”
And in Pennsylvania, the risk is real.
According to the Centers for Disease Control and Prevention, Pennsylvania led the nation in reported Lyme disease cases in 2016 with more than 12,000. Runner-up New York reported 4,002 cases followed by New Jersey with 3,850. Since 2009, Pennsylvania has led the nation in reported Lyme disease cases but Cassetori said the threat of the disease is still taken for granted.
“People don’t realize how common ticks are, particularly this year,” she said. “Lyme disease can be difficult to diagnose and 50 percent of the people bitten by a tick don’t recall a bulls-eye rash.”
Children are at high risk for Lyme disease and that’s what drives Cassetori to raise awareness and educate people on prevention. Her organization, NEPA Lyme Support Group, meets monthly and hosts expert speakers on the issue and offers plenty of information on protecting yourself against ticks.
“If there was education in schools, for example, children can at least learn what the bulls-eye rash means and bring it to the attention of their parents,” Cassetori said. “If we can raise awareness we can reduce the risk.”
Because a year had passed between when her daughter was bitten by a tick and when she was diagnosed, Cassetori said the Lyme bacteria had time to spread to where her daughter now has persistent symptoms.
Cassetori recently traveled to Connecticut to visit with an infectious disease specialist who recommended IV antibiotics for her daughter. Such a procedure is covered in Connecticut, as well as other states, but Pennsylvania has no law that requires insurance companies to pay for longer-term antibiotic treatment of Lyme disease, even if it’s recommended by a physician.
Considering Pennsylvania leads the nation in Lyme disease cases, Cassetori hopes that will change. She recently spoke at a rally in Harrisburg in support of two proposed measures that would require insurers to cover antibiotic treatment plans doctors prescribe for Lyme and related tick-borne disease, regardless of whether that treatment is short-term or long-term.
“I don’t think we should live in fear of ticks and Lyme disease, but we need to be aware of how we can reduce the risk, particularly in our children,” Cassetori said.