March 8, 2004
By JESSICA L. ABERLE
of the Journal Star
© Peoria Journal Star, Inc.

LEWISTOWN - Three years ago, doctors informed Monica Smith she had multiple sclerosis.

Then the 42-year-old Lewistown woman started learning of other MS patients in the area, so many that it seemed almost incomprehensible for such a small town.

"For there to be 18 in a community of 2,500 is just too many," said Smith, who now serves as the community coordinator for a national MS/ALS study. "Either our numbers are elevated or the national numbers need to reflect a better accounting."

A public information meeting is scheduled for later this month in Lewistown to recruit people with MS or amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease. Medical researchers plan to conduct a prevalence study of Lewistown, DePue and three other Illinois towns as part of a five-state study, according to Barbara Sjostrom of Health Systems Research, a public research group from the University of Illinois College of Medicine in Rockford.

Sjostrom's group pitched the study in November 2002, but she said it has taken this long just to get to the public meeting phase because of public health and confidentiality requirements of the Centers for Disease Control and Prevention.

"The point of the study is to find out if there are higher-than-normal levels," Sjostrom said. "People already have some concerns, but there's nothing definite about that. We need to get a scientific basis if there are higher levels and possible further investigation can identify causal conditions."

Study participants must be at least 18 years old, have lived in the 61542 ZIP code any time between 1998 and 2002, have a diagnosis of MS or ALS and have had a doctor's visit for the disease during the time frame. Those wishing to participate confidentially can contact Smith or Health Systems directly.

The study, originally focused on MS, also will look at the incidence of ALS, because it could share some causative factors with multiple sclerosis. Smith said she knows of only a couple possible cases of ALS in Lewistown and that of a man who died of the disease about 15 years ago.

Sjostrom said the Whiteside County Health Department raised the idea of the study a few years ago because of a believed high level of MS in Morrison. Sjostrom said an elevated incidence was determined, but the MS diagnoses were not verified. That study however, prompted contacts from other communities such as Lewistown, DePue, Paw Paw and Savanna, which also will be included in this study.

"I think it can give greater understanding of how widespread certain diseases are," Sjostrom said. "While we won't find a cause right now, this could lead to further investigations. Environmental factors are a concern. This is kind of the first step in the scientific investigation."

The rate of incidence of MS in Morrison is believed to be one of the highest in the world. If the Lewistown numbers are found to be accurate, the incidence rate there would be even higher.

Another farming community in Fulton County, Astoria, may have even higher numbers than Lewistown. Smith said she heard an incidence rate of MS of about 16 in the community of less than 1,200. Sjostrom said national statistics indicate a community of 1,800 people should have less than two people suffering from MS.

While Sjostrom said it is too late to include Astoria in the national study, the research group would like to collect information from the community for future studies and comparison. Sjostrom's group also has heard of elevated levels of MS in Gridley and would be interested in sending questionnaires to affected residents in that community as well.

Lewistown is mainly a farming community with agricultural chemicals and the recipient of Chicago sludge at its landfill. DePue, in Bureau County, has about 1,840 residents and a federal Superfund site where zinc smelting occurred. Savanna is in Carroll County and was home to a weapons storage site, and Paw Paw in Lee County had fertilizer from DePue spread on its fields. Morrison, where the study began, is an agricultural community with manufacturing.

A $100,000 federal grant for the study came from the Agency for Toxic Substances and Disease Registry, an affiliate of the CDC.

MS occurs when myelin, a white, fatty tissue, that covers the nerves from the brain and brain stem becomes diseased and is replaced with scar tissue. While symptoms vary depending on which nerves are affected, some of the most common are fatigue, walking difficulties and optic neuritis, according to Smith.

"If in fact there are elevated levels, then perhaps there is a causal reason," Smith said. "And that maybe will put researchers closer to a cure."

To be included in the study, Sjostrom said MS diagnoses will have to be verified according to strict scientific criteria.