OSHTEMO TOWNSHIP, Mich. - When her boys were younger, Sheri VanderLugt read them the book “How Do Dinosaurs Say Goodnight” at bedtime.
Recently, VanderLugt recorded herself reading it for her future grandkids, convinced she’ll be gone before they arrive.
VanderLugt has amyotrophic lateral sclerosis, more commonly known as ALS. She’s one of three women from the same Kalamazoo County neighborhood fighting the neurodegenerative disease.
“Most people with ALS live two to five years, and I’m at 12 years. So that’s an odd variant right there,” she said.
VanderLugt, Sherry Schuen and Marsha McKenzie moved to the Westport development in Oshtemo Township in the late 1970s. The former neighbors weren’t diagnosed with flail limb ALS until decades later.
“When Sherry first said something to me, I was like, ‘There’s just no way that we have the same thing,’” VanderLugt said. “And then when [Marsha] came into the picture that was really bizarre.”
The Midwest has the highest prevalence of ALS of any region in the country, and five of every 100,000 people in Michigan has ALS, said Dr. Eva Feldman, who leads the research team at the University of Michigan’s ALS Center of Excellence in Ann Arbor.
The stark numbers were a driving force for the center’s latest research, which found that exposure to organic pollutants, including PCBs (polychlorinated biphenyl) and legacy pesticides increased the risk of developing ALS.
Patients with elevated exposure also had decreased survival rates, dying nine months earlier than those with lower levels of exposure, Feldman said.
“It’s likely that exposure to both industrial-type compounds, as well as agricultural compounds, can predispose someone to developing ALS, particularly if they have a genetic predisposition to getting ALS,” she said.
The legacy pollutants found in patients' blood stay in the environment for decades at measurable levels, Feldman said.
"It could simply still be by chance; it’s up to us to prove it,” she said. “We see patients, and when they come to us with these clusters and questions, that’s what makes me come back here.
“We really strongly believe that it’s public health importance to address environmental toxins in the state of Michigan. We have many uncleaned Superfund sites that need to be cleaned up.”
The study got the Kalamazoo County trio thinking about their neighborhood and contamination they may have been exposed to decades ago.
“I’ve thought of everything,” McKenzie said. “Every fall I’ve taken, every this and that, so maybe this is the answer.”
The lone contamination site near the neighborhood is the K&L Landfill, which is roughly three miles southwest, said Scott Dean, spokesperson for the Michigan Department of Environment, Great Lakes and Energy.
Contamination was found in groundwater at the now-Superfund site in 1979. The county placed a layer of mixed soil and clay over the landfill the following year.
“The known direction of groundwater flow is primarily northward—not toward the mapped area,” Dean said.
"Unless the state government requires every physician to report the disease, we don’t understand the true prevalence of ALS,” Feldman said
The three women aren’t hopeful for results in their lifetimes, but they are willing to volunteer for any testing.
“I would love if they could draw all three of our blood and see if there’s anything connecting us,” VanderLugt said. “Is it too late?”
Despite the nature of the disease and moving away, the three women cemented a bond far deeper than their shared neighborhood.
“Having a community is huge because you do feel so alone,” VanderLugt said.
Dr. Eva Feldman will be speaking about her research at the Susan Mast ALS Foundation’s educational luncheon on Monday, May 20. Register here.
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