Bugs do sting, crawl and infest people. But for people who suffer Delusory Parasitosis, or Ekbom Syndrome, there are no bugs involved, just the irritating sensation that they are.
Collecting data from sufferers
“No one is studying this condition,” said Nancy Hinkle, an entomologist with the University of Georgia College of Agricultural and Environmental Sciences. “The logical groups -- psychologists and psychiatrists -- never see these people because they don't consider themselves to have a mental illness. Since we were receiving calls from so many Ekbom Syndrome sufferers, we decided that it was up to us to pose some testable hypotheses and attempt to develop a valid research approach to investigate the condition.”
Hinkle and graduate student Jennifer Applegate are getting to know more about sufferers of the syndrome.
“So little is known about the condition, we are attempting to establish a foundation for investigating it by developing background information on sufferers' demographics, experiences, descriptions of the pest, control strategies employed and ancillary conditions,” Hinkle said. “As with most epidemiological studies, because the cause is not known, a broad survey is undertaken, and then we look for trends and connections.”
Females in their 60s
Their survey results show that the average sufferer is 64 and female. Other common characteristics are those who are self-employed or unemployed and somewhat socially isolated. Hinkle has gotten calls from sufferers representing a full range of socioeconomic backgrounds and professions, including doctors, nurses, professors and even a pest control operator.
As part of the research, they surveyed 15 U.S. entomologists who regularly deal with Ekbom Syndrome sufferers. From this, they estimate more than 250,000 people have the condition at any given time in the U.S.
As common as MS
“We have found that Ekbom Syndrome is more common than the medical literature had led us to believe,” Hinkle said. “Its incidence is comparable to multiple sclerosis.”
Results from Hinkle’s research are published in the April edition of Annual Reviews.
Hinkle’s lab gets pest samples every week from people who believe they are infested by bugs. The samples contain skin cells, hair, dirt and dust, but no bugs.
“Many people think they are infested by an unknown bug or one so small or elusive it is impossible to capture for a sample,” Applegate said.
Applegate calls the sufferers to discuss their results. “Callers are frustrated when we do not find insects in their samples,” Applegate said. “As entomologists, we can only determine whether insects or mites are involved; we cannot make medical diagnoses.”
Don't criticize or ridicule
It is important to remember that these people are not crazy, Applegate said. Their symptoms and suffering are real and disrupt their lives.
Know someone infested? Applegate says not to criticize the condition or person. This may push the sufferer further into the belief or isolate them. Take them to the doctor to be examined for scabies and lice, the only two common human parasites.
There are no human-skin parasites that are invisible, Hinkle said, and even microscopic ones are rare.
“If there is a valid insect or mite causing the infestation, the individual should be able to collect samples and provide them for identification; we can then make recommendations for their effective suppression,” Hinkle said.
Medications can cause symptoms
There are some explanations for the crawling sensations described by sufferers. Common over-the-counter and prescription medications can cause pruritus and the perception of being infested with parasites. Depression, anxiety, stress and other psychological conditions are known to initiate the “itch-scratch” cycle, Hinkle said.
“As our population ages, the incidence of Ekbom Syndrome is increasing,” Hinkle said. “Dealing with a loved one suffering from this condition can be frustrating and draining. Family members should be assured that the condition can be successfully treated with medication. But it is difficult to persuade the sufferer to seek treatment because they are convinced that they are infested with bugs. Sufferers often protest that it can't be a delusion, because they feel and see the bugs; of course, the point is that if one realizes that he is delusional, then he is not.”