October 16, 2018
Tick-borne Lyme disease is often mischaracterized and seen as an inconvenience rather than a potentially lethal consequence of a hike in the woods. In 2013, the Elone family of Poughkeepsie, N.Y., who are the subject The Little Things, tragically learned that Lyme disease could be fatal without proper treatment.
Joseph Elone, a young musician and aspiring environmental engineer, returned home with a cough, headache and fatigue after a trip to Rhode Island. He was tested for Lyme, but the results came back negative. Just a few weeks later, Elone collapsed, succumbing to bacteria that entered his heart tissue from disseminated Lyme disease.
He passed away in the hospital from a typically treatable condition known as Lyme carditis.
The story was widely covered in the media, but it was misidentified as Powassan encephalitis due to Elone’s initial negative Lyme test results. This left his story unfinished and untold to wider audiences.
But not anymore.
After moving to the Hudson Valley to raise their family, actress Masterson and actor Jeremy Davidson heard of the Elone family and wanted to use their platform to spread the word about the hidden dangers of this seemingly innocuous disease.
Through Storyhorse Documentary Theater, a company founded by Masterson and Davidson with the hopes of sharing stories of their community through first-hand accounts and transcribed conversations, the true story of the Elone family was brought to audiences across the country.
Storyhorse partnered with PA Lyme to share Joseph Elone’s story and the stories of three other local Pennsylvania families who lost their loved ones to Lyme disease and brought the production to Ursinus.
The Elone family, as well as the Furey, Naticchia, and Smith families, sat in the front row of the Lenfest as advocates for greater education about Lyme.
“They are using art to really change conversations,” Julia Wagner, president of PA Lyme, said of Masterson and Davidson.
The staged reading featured accomplished actors Kathryn Erbe, Leon Addison Brown, Avery Whitted and Malik Reed, and there was a question and answer session with a panel of distinguished speakers introduced by Robert Dawley, a professor of biology and director of the Parlee Center for Science and the Common Good.
“The family that we’ll come to know tonight could never have predicted that Lyme disease would matter to much to them, but once it did they had to seek new answers to the question, ‘How Should We Live Together,’” Dawley said, reflecting on one of the four questions of Ursinus’s core curriculum. “And they had to come to understand the world in new ways, struggling to gain expertise in new things, because only then could they see clearly: what should they do?”
“It’s not a challenge that we would wish on any of the 18-to-22 year-olds in our charge,” he said. “But for better or for worse, we can be sure that many of them—perhaps all of them—will face challenges of this magnitude at some point in their lives.”
A disturbingly common thread among all of the Lyme-related stories shared throughout the evening was a lack of proper medical treatment. In many cases, the panelists shared, doctors are discouraged from treating anything other than an acute, clear case of Lyme. However, as was the case with Joseph Elone, the test for Lyme disease is not always reliable. In fact, the test is only 50 percent accurate.
“We all have to be advocates for our families and ourselves. When in doubt, treat. When in doubt, shout,” Masterson said.
She and the other panelists encouraged the audience to speak up about Lyme with their doctors if they suspect it, even if the test is negative.
Nicole Chinnici, a panelist and laboratory director at the Northeast Wildlife DNA Laboratory, offered tick-bite prevention tips—such as repellent spray and wearing proper attire—while warning that 85 percent of ticks carry and can spread at least six illnesses, including Lyme disease. Pennsylvania is the host to many ticks with its vast deer population and the wooded areas in our own backyards can provide the perfect breeding ground for them.
For more information, visit the PA Lyme Resource Network. —By Mary Lobo ’15