Cindy Duehring: A Beacon in a Toxic Storm

Cindy Duehring, director of the Environmental Access Research Network and publisher of Medical & Legal Briefs: A Referenced Compendium of Chemical Injury, has spent the last decade providing research services for people suffering from multiple chemical sensitivity (MCS). In 1997, Duehring was honored with the Right Livelihood Award.

Duehring also suffers from MCS. The last time she walked in the open air was in September, 1989. Now forced to live inside a highly-filtered "safe house"in North Dakota, Duehring spends six days a week sifting through peer-reviewed medical literature and answering public queries. This is her story.

In 1985, I was studying to become a doctor in Seattle when I was poisoned by a local company that misapplied pesticides inside my apartment, saturating all my belongings, furniture and clothes.

One of the pesticides was diazinon, which is now banned for use on golf courses and sod farms because of the huge bird kills that followed normal use. The other chemical, chlorpyrifos (aka dursban), had been withdrawn from use for indoor flea control after several poisoning incidents that resulted in numerous chronic health problems, including a high incidence of multiple chemical sensitivity.

The licensed applicator who saturated my clothes with the nozzle from a spray tank told me the pesticide was so safe that "a baby could lick it off the floor."

Had I been aware of the chemical's toxicity and that its use inside a dwelling was a violation of federal law, I would have followed the appropriate regulatory guidelines and disposed of my clothes under the rules for hazardous waste. Instead, I continued wearing them.

As a result, I sustained nervous system damage and acquired a severe seizure disorder that escalated to the point where even low-level exposure to chemicals - such as those found in perfumes and detergents - could trigger seizures.

I also developed a chemically-induced autoimmunity disorder that affected my internal organs; caused sensory nerve damage in my hands, feet, arms and legs; and led to kidney damage, cardiovascular problems and porphyrinopathy - a serious metabolic disorder that interferes with the production of heme, the primary component of the bloodstream's oxygen-carrying hemoglobin.

Porphyric attacks are characterized by extreme pain, nausea and vomiting. Severe attacks can quickly become life-threatening, with seizures and risk of kidney or respiratory failure. Exposure to insecticides, herbicides, disinfectants, solvents and chemicals such as chlorine and ammonia can trigger porphyric attacks.

Exposure to full-spectrum light and UV light can also trigger the kind of porphyric seizures that contributed to my progressive kidney damage. I have survived several serious episodes of temporary kidney failure and have repeatedly been revived from anaphylactic shock - one time after my respiration had entirely ceased.

Since September 1989, I have been unable to breathe outdoor air because the particulates found in unfiltered air cause a bronchial shutdown. Face-filters or respirators do not provide sufficient filtering capacity. In addition, I generally react to materials in the masks.

I am now compelled to live in a sealed house built of non-toxic materials, breathing air that is filtered. When friends or family members visit me, they first must follow an exhaustive cleansing routine because even minute pollutants can trigger seizures and respiratory shutdown.

I cannot watch television or use a computer or printer because the flashing lights and low-level noise pose the danger of triggering severe seizures. My susceptibility to audio-induced seizures has steadily worsened to the point where I am no longer able to use the phone.

Specialists have told me they are amazed that I am alive, given the severity of my initial exposure. Tests conducted four and five years after my exposure showed extraordinarily high levels of toxic industrial solvents and propellants in my blood. Doctors who regularly treat occupationally-exposed industrial workers said the levels were what they'd expect to see in an industrial accident and that such exposure should have been lethal.

I sustained permanent organ system damage. In spite of everything we've tried, my health has continued to deteriorate. While there are a number of things that can be done to reduce exposures and lessen symptoms, there is no cure for MCS.

MCS: A Global Plague

MCS cuts across every economic, educational and sociological category. The affliction is growing at an alarming rate - not only in the industrialized world, but even in isolated places such as rural South Africa.

One hospital in England has already registered more than 12,000 patients with chemical sensitivities and is seeing 1000 new cases each year. In the US, a 1981 National Academy of Sciences report estimated that up to 15 percent of the population showed heightened sensitivities to chemicals. More recent studies indicate that one-third of the US population now suffers from MCS symptoms.

According to a European Community report commissioned by the European Union, physicians from nearly every medical discipline have reported encountering individuals with chemical sensitivity.

As of October 1996, the US EPA had identified 75,857 different chemical compounds in commercial use. Approximately 1,500 new chemical products are introduced each year. According to the National Academy of Sciences' National Research Council (NRC), not one of the potentially-neurotoxic compounds that came into use in industrial and consumer products before the passage of the 1976 Toxic Substances Control Act has been tested for neurotoxicity.

Dr. Kenneth Olden, director of the US National Institute for Environmental Health Sciences. has expressed concern over the "regulatory gridlock" that only allows for testing 10 of the 1,500 chemicals that enter the market each year. Each full EPA bioessay takes five years and costs $2.6 million. But this seemingly extensive testing fails to take into account possible synergistic effects of the complex chemical mixtures that commonly occur in the industrialized world.

Isolation and Inspiration

The main reasons my work has gained such high credibility (to the point that even government agencies refer people to our organization) are the accuracy of my reporting and the sources of my material. I report on and reference only conservative, peer-reviewed medical literature, government reports and legal cases.

As my health has deteriorated and my physical limitations have become greater, I have found ways to work around them. I have hired extremely competent people who conduct computer literature searches, look up studies under my direction, do the typing and handle incoming mail and fax orders. I also rely on volunteers, including my family.

Once or twice a day, my husband Jim brings the mail and faxes. If the mail has picked up too much perfume or if it has been exposed to routine pesticide contamination, Jim photocopies it for me on special paper. If I need to review a letter immediately, I use a filtered reading box. If it can wait, we air the copies in a room completely separate from my airflow.

I also have large walk-in closets fitted with carbon air filters where I keep my extensive collection of toxicology books, medical and legal journals, government reports and medical studies. Aluminum-lined bankers' boxes and tin canisters serve as file cabinets, reducing my exposure to paper, ink and copier fumes.

Until 1997, I was able to perform a tremendous amount of work over the phone. I set aside three days for phone work and three days for uninterrupted study and writing. During business hours, my phone rang non-stop.

Because of the seizures I have in my sleep, I wake up each morning with blurred vison, shaking with tremors, experiencing intense pain and nausea, and feeling utterly exhausted. After drinking large amounts of heavily filtered water and organic juice, the tremors and blurred vision generally cease.

When severe audio-induced seizures caused my health to deteriorate to the point that I could no longer use the phone, I was utterly devastated. It was the closest I ever come to saying, "This is impossible; I give up."

But the letters were still pouring in, the phone messages were piling up and the tremendous need was still out there. I knew that, if I quit, I would go into an unbearable depression. So I revised my brochures and order forms to provide the same services through mail-order.

My family, especially my husband, has seen the toll my work has taken on my health: I pay a price for what I do. But they also understand my need to try to do something worthwhile with whatever health I have.

It's easier to understand how much I'm able to get done when you stop to think about the fact that I have no distractions. I can't watch TV, listen to music, run errands, go shopping, or even go for a walk outside. My husband is only able to visit me on weekends because I can't be around him on days when he's been exposed to the perfumes and detergents that other people use.

If all I did was read magazines and novels, I would quickly feel so purposeless and bored that it would be a whole lot harder to get out of bed in the morning. I am curiosity-driven and the research I do is fascinating to me. Not only is it an escape from dwelling on my own circumstances, but attempting to help others gives me a sense of purpose and adds meaning to my existence.

When I start to feel sorry for myself, I think of those who are suffering unspeakable deprivations and tortures in prisons for their beliefs or political ideals, and I feel ashamed. Even if my home is a prison and my body is the master jailer, I still have tremendous freedoms and luxuries that others can only dream of.

I am thankful that, in acknowledging my work, the Right Livelihood Award Foundation is calling attention to the growing global problem of human chemical injuries, including Multiple Chemical Sensitivity.

For more information, contact: Cynthia Wilson, executive director of the Chemical Injury Information Network, PO Box 301, White Sulphur Springs, MT 59645 (406) 547-2255.