5 clusters in state targeted for study
January 5, 2003
By Julie Deardorff
Tribune staff reporter
PAW PAW, Ill.
No one knows why multiple sclerosis has relentlessly targeted Harold Ikeler's family. His wife died of it; now all three of his daughters and five grandchildren have the same crippling disease and related symptoms.
And the Ikelers aren't the only ones battling the illness in this tiny, rural community south of Rockford. At least four other cases have been diagnosed in the town of 850, where one case would be more likely for its size.
The high number of cases traced to Paw Paw and several other Illinois towns is the basis for an unprecedented three-year effort designed to determine whether something in the air, water or soil triggers the illnesses.
It's a critical question for a mysterious disease that scientists haven't yet unraveled. Though genetic predisposition is known to play a role, other researchers are looking at bacteria, viruses or a combination of events as possible factors.
Disease clusters, however, are notoriously hard to investigate and prove, regardless of the illness. The task is even more daunting with multiple sclerosis, a chronic, incurable disease that affects the central nervous system. It is unpredictable and often misdiagnosed, making it difficult to track.
So far, scientists don't know what an "excess" number of cases might be, since no nationwide registry exists, symptoms come and go, and it can't be definitively confirmed or ruled out by a single test.
In addition, the rates of multiple sclerosis vary by latitude. The disease occurs more often in women than men and is more common in those of Northern European ancestry, so researchers must also factor in age, gender and ethnicity, as well as the geographical location.
A possible coincidence
And as unfathomable as the idea might seem to families like the Ikelers, it is possible for the cluster to be a coincidence.
"The reality is we might not find environmental causes, but we have to start somewhere," said principal investigator Joel Cowen of the University of Illinois College of Medicine at Rockford, which is leading the study. "Linking it to the environment is a very difficult task. We will have contributed [to research] if we can describe the people, their rate and background in each geographic area."
Cowen's study is one of five in the United States that received approximately $100,000 from the federal Agency for Toxic Substances and Disease Registry, just the second round of governmental funding targeting environmental causes of multiple sclerosis.
Researchers in Illinois, Texas, Massachusetts, Oregon and Missouri are trying to determine the prevalence of multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) in communities near hazardous waste sites that appear to have rates well above the average of one case per 1,000 people. It is the first such study for ALS, a progressive motor neuron disease that attacks nerve cells in the brain and the spinal cord.
The five small western and central Illinois communities in the study were all chosen because of a high level of concern in the community and an unusual number of cases. The waste hazards in these towns include a zinc smelter in DePue, a shuttered Army depot and weapons storage facility in Savanna and agricultural and manufacturing waste in Lewiston, Morrison and Paw Paw.
In DePue, where nine cases of multiple sclerosis were confirmed in 1998, researchers had previously investigated a potential link to a zinc smelter that operated for more than 100 years and was deemed a federal Superfund site by the U.S. Environmental Protection Agency. Though scientists found a higher prevalence of the disease and a possible health concern because of the former zinc smelter, they could not establish a direct link.
"[Multiple sclerosis] probably involves a number of genetic defects, coupled with a trigger, a virus or an environmental factor," said Dr. George Katsamakis, a neurologist at the multiple sclerosis center at Rush-Presbyterian-St. Luke's Medical Center in Chicago. "But the key is it's multifactoral, so to implicate an environmental trigger at this point is a very ambitious idea."
Still, worried residents armed with anecdotal evidence are compiling their own local registries and finding suspicious patterns. In Lewiston, a town of 2,700, Monica Smith is concerned that treated human waste from Chicago was spread on farm fields in the area for three decades.
"The grain grown on those [treated] fields was not allowed for human consumption," said Smith, who was diagnosed two years ago with MS and has since discovered that at least 13 other people in her town have multiple sclerosis. "I don't know if that's what it is, but ... something just isn't right."
In Paw Paw, where Harold and Virginia Ikeler raised their family, the potential environmental threat isn't as obvious. Some believe fertilizer from DePue was spread on Paw Paw's fields. The town is also in an agricultural area where, as in many communities, pesticides and chemicals are widely used.
The main reason Paw Paw is included in the study, Cowen said, is resident Beth Buffington, who started researching multiple sclerosis after the disease was diagnosed in her best friend, Robin Griffin, two years ago. Buffington, a mother of two, tracked down at least 13 current and former Paw Paw residents with the disease, including the Ikelers.
"I was frustrated watching [Griffin] turn from a vibrant young woman to someone struggling with multiple sclerosis," said Buffington, who was born and raised in Paw Paw, left the area for several years and returned to raise her family.
Nationwide, about 400,000 people suffer from multiple sclerosis, about one case for every 1,000 people, though it's difficult to get an accurate picture.
"People are often reluctant to disclose multiple sclerosis if it's not obvious," said Nicholas LaRocca, director of health care delivery and policy research for the National MS Society. "They're afraid of discrimination; they don't want others to be aware of it; or they're trying to minimize it in their own lives."
Multiple sclerosis is believed to be caused when myelin, the fatty tissue that surrounds and protects nerve fibers, is attacked by the body's immune system. When myelin is lost in several areas, it leaves scar tissue called sclerosis.
Myelin helps nerve fibers conduct electrical impulses. If nerves can't send impulses to and from the brain, the result is mild symptoms, such as intermittent numbness for some, and more serious, debilitating problems for others. Even in the same person, symptoms can vary in severity and duration, affecting everything from balance and coordination to vision, speech and muscle spasms.
Unsubstantiated theories about what causes multiple sclerosis range from agents in the genes, water, food or soil to the controversial suggestion that it is a sexually transmitted disease.
"A number of groups are looking at viral triggers; a number are looking at bacterial. Not as many are looking at the environment because the canvas is so broad," said Katsamakis. "At least with bacteria you can focus on a couple that mimic central nervous system bacteria, but environmental triggers are almost impossible."
The disease was diagnosed in Virginia Ikeler of Paw Paw when she was 20, and for three decades she periodically lost her sight or lost feeling in her feet and hands. Later in life, she suffered a severe attack and was immobilized until she died at 59.
Harold Ikeler cared for his wife for her last nine years, and after she died he wanted nothing more to do with the disease. "I distanced myself for a long time," he said.
But then his children were diagnosed. His grandchildren. And neighbors like Griffin.
Recently, Ikeler recalled a curious fact: His father-in-law was a blacksmith
who ran a welding shop. "He'd come over and say, `I had a terrible time
sleeping. My leg was numb,'" Ikeler said. "Now I keep thinking, was it
because he had multiple sclerosis, or because he was on his feet all day?"
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