- Associated Press - Monday, October 24, 2016

SIOUX FALLS, S.D. (AP) - The pamphlet wouldn’t answer Becky Sivertson’s questions.

“The central nervous system consists of the brain, spinal cord, and the optic nerves. Surrounding and protecting the nerve fibers (or axons) of the central nervous system is a fatty tissue called myelin.”

Sitting on a papered exam table, Sivertson fought back tears.

When myelin or the nerve fiber is destroyed or damaged, the ability of the nerves to conduct electrical impulses to and from the brain is disrupted, and this produces the various symptoms of multiple sclerosis, the Argus Leader (https://argusne.ws/2dES82M ) reported.

She asked the doctor to repeat the diagnosis: multiple sclerosis.

MS symptoms can include reduced or abnormal sensations, weakness, vision changes, clumsiness, sudden loss of bladder control, and so on. Symptoms might appear in any combination and be mild or severe.

The phone call Sivertson made in the parking lot mirrored a conversation she had six months earlier.

In September 2007, Melinda Bender broke the news to Sivertson that she had been diagnosed with MS.

Now, in March 2008, the best friends were repeating the same stunned exchange with roles reversed.

“We caught something in that building,” Sivertson said.

That building is Southeastern Behavioral Health’s 5th Street Connection at 100 W. 5th St. in downtown Sioux Falls.

Sivertson and Bender worked at the mental health clinic in the mid-1990s, a decade before an ambitious redevelopment project would transform the area by extending Phillips Avenue north to Falls Park.

Soon after Sivertson’s call, Bender heard from another former colleague, Dr. Stacey Herbster. She also had been diagnosed with MS.

They learned Dorothy Darveaux was struggling with thyroid issues, fatigue, and eye problems. Her former officemate Theresa Aasen had developed similar symptoms.

The women tracked down more former co-workers and learned about another MS case and two others with fibromyalgia. Ellie Anderson had Hashimoto’s disease, a condition in which the immune system attacks the thyroid. Karen Anderson was diagnosed with sarcoidosis and Jill Baldwin had a child born with reflex sympathetic dystrophy syndrome, which causes pain and inflammation.

After sketching out their office, they concluded 10 of the 14 people who worked there two decades ago had since developed auto-immune disorders or had children with inflammatory diseases.

Could it be coincidence? Desperate to understand, the group set out in search of information to explain their connection.

The therapists, psychiatrists, and case managers at 5th Street Connection then had a front row seat to one of the biggest pollution cleanups in the city’s history.

The clinic sat next to a salvage yard with a long history of industrial use. Today the property is part of Falls Park, but it used to be mostly wetlands. Seney Island was a picnic spot for residents in the late 1800s. As the city’s industry grew, the marshy area around the island was filled in with waste to make the land available for development.

A coal gasification plant used the site as a landfill before selling the property to the Milwaukee Railroad Company in the early 1900s. After the railroad went bankrupt, the property was sold to Pitts, Inc., which turned it into an auto salvage yard.

As debris and scrap metal piled up, the city of Sioux Falls began eyeing the property in the early 1990s as part of a vision to connect downtown with the city’s namesake park. The Phillips to the Falls project would change the city, but first officials would have to address more than a century’s worth of pollution.

The ground was soaked with lead, arsenic, mercury and a long list of heavy metals and petrochemicals linked to a wide range of health problems with exposure.

The cocktail of toxins can have dangerous health effects, according to assessments from the Center for Disease Control and Prevention’s registry of toxic substances. The substances included carcinogens and toxins linked to problems with nervous systems, immune systems and reproductive systems.

Sivertson and her coworkers used to joke during smoke breaks, “What do you think we’re catching out here?”

The link between multiple sclerosis and the list of contaminants found in the salvage yard soil is tenuous.

Early research has found correlations between lead exposure and MS, but it’s not a definitive link, according to Frederick Miller, chief of the Environmental Autoimmunity Group at the National Institute of Environmental Health Sciences. The lack of conclusive evidence doesn’t rule out the association, though.

“The bottom line is that more research is needed to address this,” Miller said.

Buried deep in the ground, the toxins generally pose little risk, but dangerous exposure can occur when contaminated soil is disturbed without taking steps to prevent dust or debris from becoming airborne.

In 1993, the city, state and a private contractor began drilling bore holes, testing soil and water and removing contaminated material to keep it from getting into the river. All records and accounts suggest workers followed protocols for preventing the spread of contaminants, carefully managed soil and tarping it before taking it to a landfill.

“Based on available information from this project, which was undertaken over 10 years ago, people working in offices in this area would not have been exposed to airborne contaminants from the project,” assistant city attorney Diane Best said.

The Department of Environment and Natural Resources said it hasn’t heard any reports of illnesses springing up as a result of the project and didn’t believe people in the area were exposed to any contaminants.

And in any remediation project it’s unlikely that the excavation project could have generated enough contaminated vapor exposure to drift offsite to the building without contractors knowing, said James Harless, vice president of environmental services at Michigan-based engineering consultation group SME.

“If there were, the contractors and workers would have been dropping like flies,” he said.

Sivertson, Bender and Darveaux compiled stacks of public documents related to the pollution cleanup but never found a smoking gun.

Worthington attorney James Malters worked with the women for months, trying to flesh out the theory that might connect the coworkers’ conditions with the contamination.

Their best hypothesis: at some point before the official cleanup began, the city or state dug up untested ground and unknowingly sent contaminated soil airborne.

“If the wind blew through the door, we were hit,” Darveaux said.

The problem: there is no evidence to build a case against the city or another party. Any dirt that was hauled away untested has long disappeared into a landfill.

“The evidence was taken away a long time ago,” Malters said.

The attorney said extensive studies would need to be done on the soil that was hauled away and conclusive proof that the exposure led to the diseases would need to be proved before he could make the case.

“Sometimes the legal system isn’t the best way to resolve problems,” he said. “It would be like suing a dead man or a pauper, you can’t succeed.”

Maybe some Erin Brockovich character could figure it out, but Malters said he couldn’t find a way to connect the dots.

He broke the news to Sivertson, Bender, Darveaux and the others this summer after reaching a dead end in his research.

Clusters of MS or the other autoimmune diseases aren’t unprecedented, but relatively little is known about how common they are or why they occur.

At this point the National MS Society has tracked some clusters of diagnoses but doesn’t have a process of verifying that they all stemmed from a root cause. Researchers know that latitude and family history can contribute to the likelihood of developing the disease, but few other details have emerged.

Nicholas LaRocca, vice president of health care delivery and policy research for the National MS Society, said the group is working to track cases of MS across the country through a registry to better see where clusters have developed. He said mapping those trends could help guide discussions about what factors incite the disease.

“There are clusters out there. Investigating them is the challenge,” he said

LaRocca said the society has lobbied Congress for financial help in creating the registry but hasn’t had success so far. A similar registry for ALS was approved in 2008.

For now, the society is unable to provide many answers for groups that suspect clusters, LaRocca said. And with the registry set to become available in 2017, he’s had to say call back in a few months.

“Unfortunately that’s the answer at this point,” LaRocca said.

The women are left praying on miracles and the compassion of others to help them. Bender and Sivertson are trying to raise money for stem cell treatments. Bender, 50, is already in a motorized scooter. Her doctor recently told her she’s not responding to the highest dosages of her medication and, barring a scientific breakthrough, she’ll likely decline in health.

“They’ve basically given me a living death sentence,” Bender said. “I just want answers.”

Dr. Jerome Freeman, Sivertson’s neurologist, said there are multiple inciting factors for MS and until science advances, there’s no way to know for sure what caused any specific case.

“All patients would like to have an absolute answer, first in terms of what their diagnosis is and then in terms of cause,” Freeman said, “but frequently in medicine, those answers don’t exist.”

___

Information from: Argus Leader, https://www.argusleader.com


Copyright © 2018 The Washington Times, LLC.

The Washington Times Comment Policy

The Washington Times welcomes your comments on Spot.im, our third-party provider. Please read our Comment Policy before commenting.

 

Click to Read More and View Comments

Click to Hide