Months of mounting frustration surrounding a mysterious illness causing facial tics and verbal outbursts that started among 12 teenagers in Le Roy, N.Y., has come to a head as reports of the illness expand and the high school where it began comes under fire.
Nearly two dozen people, including one 36-year-old, in the upstate New York community are now experiencing uncontrollable tics, seizures and outbursts they say may have been caused by a chemical spill in the town more than 40 years ago.
The original affected teenagers -- 14 girls and one boy – all attended Le Roy Junior-Senior High School when they started showing symptoms last fall. Most of the teens have been diagnosed with conversion disorder, a psychological condition induced by stress that is sometimes called "mass hysteria" when occurring in clusters, such in Le Roy.
The parents of the afflicted teenagers contest that diagnosis and dismiss suggestions that social media may be to blame.
"No, there is too much going on in Le Roy," Charlene Leubner said today on "Good Morning America."
Leubner's 16-year-old daughter, Traci, is one of the teenagers who first began experiencing symptoms late last year.
"Mine started in early December and I started with a really bad stutter to where I couldn't talk and I got sent home," Traci Leubner said of her symptoms, which she says are provoked by stress and sadness. "It eventually developed into a head twitch and then it went away for a little while."
Leubner and other parents are demanding that the school allow environmental activist Erin Brockovich to investigate potential environmental causes behind the disease.
Brockovich, who famously linked a cluster of cancer cases in California to contaminated drinking water, prompting an Oscar-winning movie starring Julia Roberts, launched her own investigation last month. She says a derailed train that spilled cyanide and trichloroethene within about three miles of Le Roy High School in 1970 may be behind the Tourette-like symptoms.
"They have not ruled everything out yet," Brockovich told USA Today. "When I read reports like this that the New York Department of Health and state agencies were well-aware of the spill and you don't do water testing or vapor extraction tests, you don't have an all-clear."
Bob Bowcock, an investigator for Brockovich's team, was asked by officials to leave the Le Roy High School property during a visit there Jan. 28 to collect soil, air and water samples from the school grounds.
On Monday, he posted an open letter to the school asking for their assistance, according to The Daily News. The school has said it will post a response on the school district's website.
"We really want the school to do some outside testing and let Erin Brockovich's crew in because there has been great resistance as far as having them come in," Lana Clark, whose 16-year-old daughter, Lauren Scalzo, is another of the 15 students originally afflicted, said on "GMA."
"They were too quick to reach a diagnosis and they did minimal testing," she said of the school's reaction to the outbreak.
After growing frustrated with the school's care, Clark sought help from a New Jersey neurologist who volunteered to come and see the girls. He offered an alternate theory: PANDAS, a diagnosis used to describe children who have a rapid onset of neurological conditions like Tourette’s syndrome or Obsessive Compulsive Disorder following a bacterial infection like strep throat. Doctors are not sure exactly how one causes the others, but some believe it is an autoimmune response.
Clark said she not only trusts the PANDAs diagnosis - because her daughter has had many cases of strep throat throughout her childhood and had to have her tonsils removed last November - but also wants it investigated further.
"There's a great idea that what has brought on the PANDAs is an environmental issue and the school, they were saying, they did air quality testing within the school but it's like they almost have a refusal to go out and test the soil," Clark said. "We also know with the gas wells and the residue, there's a holding tank, maybe, and it's come out on the ground and killed neighboring trees and plants."
An investigation by the New York Department of Health found "no evidence of environmental or infection as the cause of the girls' illness," according to department spokesman Jeffrey Hammond. "The school is served by a public water system. ... An environmental exposure would affect many people."
Several hundred community members, parents and students gathered for a town meeting on Saturday at which the school announced that it had hired a private firm to conduct an additional round of air quality tests at the school in hopes of reassuring anxious residents.
"What I have to do as the superintendent is take what the experts are telling me, and what the experts are telling me and what the data is showing me is that there is no environment case here linked to this condition," the school's superintendent, Kim Cox, told meeting attendees.
The possibility of an environmental trigger has been bolstered by reports of similar symptoms in two teens living in Corinth, a town 250 miles from Le Roy. The girls started showing symptoms in May, around the same time they passed through Le Roy on their way to a softball tournament in Ohio. At least one has since been diagnosed with Tourette’s Syndrome.
Meanwhile, the National Institutes of Health has stepped in to offer to help solve the medical puzzle. Dr. Mark Hallett, chief of the NIH Medical Neurology Branch, said the cluster of cases offers a unique research opportunity.
"We have offered our help but have not been asked for it yet [by individual patients]," said Hallett, adding that he has not yet seen any of the teens. "One of the difficulties in this is that there hasn't been a lot of attention to this problem or very much research into it, which has made it somewhat of a mysterious disorder."
Hallett said conversion disorder is common, affecting as many as two people at his movement disorders clinic each week. But he said it's rare to see a large group of people with the same symptoms.
"We don't understand that aspect of it completely," Hallett said of the potential for conversion disorder to spread through a group, a characteristic that once earned it the name "mass hysteria." "For some reason, the brain mimics things that they know. ... It's just one of the ways the brain reacts to psychological stress. We don't understand why, but it truly is involuntary just as patients say it is."
The Associated Press contributed to this report.
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