Tuesday, January 14, 2003 - 12:00 a.m. Pacific
By Julie Deardorff
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.
The Ikelers aren't the only ones battling the illness in this rural community in north-central Illinois. At least four other cases have been diagnosed in the town of 850. 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 to determine whether something in the air, water or soil triggers the illnesses.
It's a critical question for a mysterious neurological disease that scientists haven't unraveled. Although genetic predisposition is known to play a role, researchers also are looking at bacteria, viruses or a combination of events as possible factors.
Disease clusters are hard to investigate and prove, regardless of the illness. The task is even more daunting with multiple sclerosis, an 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 factor in age, gender and ethnicity, as well as the geographical location.
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.
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.
In Paw Paw, where Harold and Virginia Ikeler raised their family, the potential environmental threat isn't as obvious. Some believe treated human waste, along with pesticides and chemicals, was spread on Paw Paw's farmlands.
The disease was diagnosed in Virginia Ikeler when she was 20. For three decades she periodically lost her sight or 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. After she died he wanted nothing more to do with the disease. But then his children were diagnosed. His grandchildren. His neighbors.
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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