A mysterious illness has brought the small Genesee County town of Le Roy, NY into the national spotlight, and two UB-affiliated doctors have joined the medical debate on what might be causing it.
In September, several teen girls in Le Roy spontaneously developed tics and twitches, which media outlets initially reported as resembling Tourette's syndrome. Concern in the school district grew as the number of teens exhibiting the symptoms increased from three to eight to upwards of fifteen. Rumors flew through the community, blaming everything from a 1970 train derailment that spilled two toxic chemicals to a combination of vaccinations for human papilloma virus and meningitis (Gardasil and Menactra).
But Dr. Laszlo Mechtler of Buffalo's Dent Neurologic Institute examined 12 of the Le Roy patients and diagnosed them with a little-known condition called conversion disorder, which has also been referred to as a type of "mass hysteria." And Dr. David Lichter – a children's neurology specialist at Buffalo General Hospital who examined one of the patients – agrees. Both Mechtler and Lichter are professors of neurology at UB.
Mechtler's diagnosis of conversion disorder is controversial. It is a psychological diagnosis; one in which mental stress "converts" into physiological manifestations. Not all of the families have accepted the diagnosis, but Mechtler did not arrive at his conclusion lightly.
While Mechtler and his associate Dr. Jennifer McVige were examining patients and running a large battery of tests on their patients, school district officials were examining air quality to test for mold, volatile organic compounds, carbon monoxide, and carbon dioxide. All testing done by the district came back negative. Genesee County Public Health Director David Whitcroft called in the state Department of Health. Consultations were conducted with the state Office of Mental Health, the Centers for Disease Control and Prevention, and researchers from Columbia University.
In an interview with The Buffalo News, Mechtler stated that not only is conversion disorder common, but that it is especially common in close-knit, rural communities. He further stated that there may be an "index" case – a patient with a physiological condition whose behavior then effects those around her.
Lichter concurs with Mechtler's diagnosis. The Le Roy patient he met with already had a pre-existing history of tics – as do two other girls with the cluster of symptoms.
"[There's] some kind of subconscious modeling that goes on in these children," Lichter said. "Modeling their behavior after the original index cases."
However, some of the parents are reluctant to accept a psychological diagnosis.
Taking the issue to the media in hopes of getting an alternative diagnosis, these parents and their children have gotten national attention, which Lichter says may even make their children worse.
"Children that have continued to appear in the media…are not getting better," Lichter said. "Those who have…accepted the diagnosis of conversion disorder, and who are getting the underlying stress and anxieties addressed with counseling and psychological support are actually improving now."
In their quest for another explanation, the parents have been bombarded with suggestions. Dr. Rosario Trifiletti, a New Jersey-based child neurologist, said the students could be suffering from PANDAS – pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections – a rare and controversial diagnosis in cases where strep infections are believed to trigger tics. He has been the only physician to publicly dispute the conversion disorder diagnosis.However, he is not the only person to disagree with the diagnosis. Consumer advocate Erin Brockovich has been to Le Roy, campaigning for more testing for environmental contaminants. In addition to the cyanide crystals and carbon tetrachloride that spilled during the 1970 train derailment, other sources for pollutants like the five natural gas wells owned by the Le Roy School District and water supplied by Monroe County Water Authority are being looked at by those suspicious of the diagnosis of conversion disorder.
Phillips Stevens, Jr, an associate professor of anthropology at UB, calls it unfortunate that the parents of the affected children are unwilling to accept the conversion disorder diagnosis.
"The diagnosis makes good sense," Stevens said. "It's too bad that parents don't want to accept it because of the words ‘hysteric,' ‘psychological,' and ‘psychiatric.' Those three words are words people don't like, but the people from Dent are absolutely correct."
Stevens' work in anthropology gives him a cross-cultural perspective in mass hysteria. He cites the Le Roy outbreak as an example of a culture-bound syndrome, a combination of psychiatric and somatic symptoms that manifests itself as a recognizable disease only within a specific society or culture.
"Culture is different, but physiology is the same," Stevens said.
This difference in culture may manifest itself in how society treats the individuals displying symptoms.
The symptoms displayed by the students in Le Roy are not unique. There have been cases in Roanoke, Va., Los Angeles, Calif., and McMinnville, Tenn. There have been cases as far away as Trinidad and Mexico and as close as Lockport. The cases in Trinidad were attributed to demoic possession, an example of cultural factors at play.
While the exact symptomology may vary from case to case – for example, the Los Angeles case presented as symptoms of food poisoning but with no bacterial causative agent – there are a few characteristics of conversion disorder that tend to be the same – most notably, the age ad gender of those affected.
Overwhelmingly, those suffering from conversion disorder are adolescent females. Lichter believes this is because females internalize stress more and are more empathetic than male. Stevens goes even further, linking culture and biology.
"Female biology is constructed to have sharper sensory perception," Stevens said. "It's important in a female's role as a mother to be more empathetic, to hear her child stirring in the night"
Lichter thinks that changes in culture may increase the incidence of conversion disorder. He cies Facebook and YouTube as modern ways of spreading the mimicry.
"Some of these girls have uploaded videos of themselves to YouTube," Lichter said. "People can model symptoms they see in people and in the environment. This used to be from direct face-to-face contact…and now with social networking, you can be exposed to this over the Web. It's possible this could lead to [a] further spread of the symptoms beyond the originally involved geographic region."
Additional reporting by News Editor Rebecca Bratek.
Email: news@ubspectrum.com
