The Autoimmune Epidemic

We are honored to have an interview with Donna Jackson Nakazawa, the author of The Autoimmune Epidemic. As is the case with CFS and Fibromyalgia (and for many of the same reasons), our immune systems are getting overwhelmed and attacking our own bodies (autoimmune disease). Lupus, multiple sclerosis, hypothyroidism, childhood diabetes and rheumatoid arthritis are just a few of the nearly a hundred known autoimmune diseases. Nakazawa cites national statistics which show that one in 12 people—and one in 9 women—has an autoimmune disease. That's nearly 24 million Americans. Yet even though autoimmune diseases afflict more than twice the number of people who have cancer, and a woman is 8 times more likely to have an autoimmune disease than breast cancer, these issues are given low priority by those who fund medical research. In her interview, Donna Jackson Nakazawa discusses the research behind and causes of autoimmune disease and how to protect yourself from getting them. I invite you to read her book and this interview to learn more about this important topic.

An interview with Donna Jackson Nakazawa

Author of The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance—and the Cutting Edge Science that Promises Hope (Touchstone/Simon & Schuster, February 2008). Available at Amazon ($16.50).

Question:

What role do autoimmune issues play in Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS)?

Nakazawa:

CFS and FMS are not considered autoimmune diseases in that they do not involve an autoantibody attack on the body, but people who have autoimmune diseases do frequently suffer from CFS and FMS. So clinicians who see autoimmune disease patients certainly know that there is a connection. Perhaps no one knows more about this connection than Dr. Jacob Teitelbaum. According to Teitelbaum, who has helped over 3,000 CFS/FMS patients, "Fibromyalgia is often triggered by autoimmune diseases like lupus and rheumatoid arthritis." In addition, he says, research shows that "patients with CFS/FMS are more likely to have autoimmune problems like Hashimoto's thyroiditis." So, it goes both ways. Why is this the case? Often, the triggers for autoimmune disease—be it severe stress, infections, or autogens—are the same for CFS/FMS. Moreover, adds Teitelbaum, "The immune alterations that occur with autoimmune diseases—and the medications used to treat them—can aggravate the immune dysfunction seen in CFS/FMS."

Question:

In your book you say that the number of people suffering from autoimmune diseases such as lupus, multiple sclerosis and type 1 diabetes has skyrocketed—more than doubling in the last three decades. Yet we hear very little about this epidemic. Why?

Nakazawa:

Lupus, multiple sclerosis, type 1 diabetes and rheumatoid arthritis are just a few of the more common types of autoimmune disease, but in fact there are nearly a hundred other known autoimmune diseases. One in 12 people—and one in 9 women—has an autoimmune disease. That's nearly 24 million Americans. Yet even though autoimmune diseases afflict more than double the number of people who have cancer, and a woman is 8 times more likely to have an autoimmune disease than breast cancer, 90 percent of Americans say they can't name a single autoimmune disease. That's because people just don't know that many painful and life-altering disorders that increasingly afflict so many of their friends and family members today are autoimmune in nature; the body's immune system, which is meant to protect us, is mistakenly attacking the body's own organs and systems.

We also don't hear much about these diseases because the exact process by which our immune system turns from friend to foe was, for many decades, the black box of modern science. Until the late 1970s scientists didn't even agree that the body could turn on itself, much less why. It's only in the last ten years that scientists have been able to show in the lab exactly how the immune system, when it's overwhelmed by foreign invaders such as chemicals and viruses, can go haywire and destroy our own tissue and organs in acts we might think of as "friendly fire." The fact that these diseases have been difficult for the medical community to understand means that even today getting a correct diagnosis can be very difficult. Most people who have an autoimmune disease see six doctors over four years before they get a diagnosis. One patient suffering from severe muscle fatigue and disabling weakness was told by a doctor she'd seen eight times: "We've given you every test known to man except for an autopsy. Would you like one of those too?" It was five years before she got a diagnosis of myasthenia gravis. The medical establishment often lacks a full understanding as to how to diagnose these diseases, dismisses women who complain of symptoms, and often has little to offer in the way of effective therapy. So one reason autoimmune diseases are not on our radar screens is that these diseases were, for many decades, mysterious and not well understood.

Another reason, I suspect, is that on some level we don't want to face the facts. Rates of these diseases have doubled and tripled in industrialized countries around the world over the past three decades. The top scientists I interviewed for my book agree that something in our environment—something far beyond a better ability to diagnose these diseases—is causing this health crisis. They are convinced that the cause of this epidemic—which is world-wide, by the way—lies primarily in our environment and in all the toxins, pesticides, heavy metals and chemicals that have become a part of our everyday living. We all carry a "body burden" of toxins in our bloodstream, even babies. Several studies show that chemicals commonly used in household cleaners, cosmetics and furniture are present in infant fetal cord blood. This doesn't sound healthy, does it? But even if we agree that this soup of chemicals within us is harmful, what do we do about it? Talking about the autoimmune epidemic is a bit like talking about global warming before the movie An Inconvenient Truth was released. For the longest time, we couldn't see, or didn't want to see, that the smallest rise in temperature would melt the polar ice caps. Likewise, we don't want to know that the ways we're polluting our environment are also harming our bodies and our immune cells. In the international medical world, the scientists who study autoimmune disease call this epidemic "the global warming of women's health." Yet the reality that the environment plays a major role in triggering these diseases hasn't yet trickled down to the rest of the population.

Question:

You coin the term "autogen" to describe the agents that trigger autoimmune disease. What are some examples of autogens?

Nakazawa:

There are thousands of probable autogens we have not yet studied. Eighty thousand chemicals have been approved for use in our environment. Every year 1,700 new chemicals are approved—that's an average of five a day. Have scientists studied the effects on our bodies of all these chemicals? No. However, those chemicals that have been researched—in occupational studies and in studies of lab animals—have been shown to play a role in triggering autoimmune reactions. For example, mice exposed to pesticides—at levels four-fold lower than the level set as acceptable for humans by the EPA—are more susceptible to getting lupus than control mice. Mice that absorb low doses of trichloroethylene (TCE)—a chemical used in industrial degreasers, dry-cleaning, household paint thinners, glues and adhesives—at levels deemed safe by the EPA, and equal to what a factory worker today might encounter, quickly develop autoimmune hepatitis. And low doses of perfluorooctanoic acid, a breakdown chemical of Teflon that can be found in 96 percent of humans tested for it, impair the development of a proper immune system in rats.

We know from occupational studies in humans that these chemicals impair our immune systems in dangerous ways. In 2007, scientists from the National Institutes of Health announced—after studying 300,000 death certificates in 26 states over a 14-year period—that those who worked with pesticides, textiles, hand painting, solvents (such as TCE), benzene, asbestos, and other compounds were significantly more likely to die from an autoimmune disease than people who were not exposed. Other recent studies show links between working with solvents, silica dust, asbestos, PCBs and vinyl chloride and a greater likelihood of developing autoimmune disease.

Question:

But not everyone who is exposed to these autogens comes down with a disease. So, why do some people get an autoimmune disease and not others?

Nakazawa:

That's because of a phenomenon I call the "barrel effect." Each person, with his or her unique genetic composition, is exposed to a myriad combination and level of autogens depending on what they encounter in their day-to-day lives through the air they breathe and what they come into contact with through their skin. This toxic stew consists not only of chemicals and heavy metals, but additives in our highly processed diet and viruses and bacterial agents to which we're exposed—all of which combine to impact our immune system. Chronic stress, which releases cortisol into our body, also plays a role in triggering these diseases as do women's reproductive hormones—which is why women are three times more likely than men to come down with an autoimmune disease. As long as your barrel is less than full, however, your immune system is still able to deal with what it confronts every day. But once the immune system becomes overburdened it can begin to send misread signals, causing the immune system to make costly mistakes and attack the body itself. Unfortunately in modern life we've created a perfect storm of factors—a plethora of chemicals, heavy metals, processed food additives, viral hits and stressors—for today's autoimmune epidemic to take hold. So much of what we encounter in twenty-first century life is causing our barrel to fill to the brim—and spill over. At that point, disease strikes.

Question:

Is it only people with a genetic predisposition who are vulnerable to this "barrel effect?"

Nakazawa:

No. Researchers have found that anyone can be susceptible. Whether or not you get an autoimmune disease depends on how many of these triggers you've been exposed to over your lifetime—or how full your barrel is. People with a genetic predisposition—for example, if you have a close relative who has an autoimmune disease, you may be genetically inclined that way—may be more vulnerable, but anyone whose immune system is overtaxed or over-stimulated can get sick.

Question:

You talk about "clusters" of autoimmune diseases in your book. For example, in Buffalo, NY, in a small neighborhood surrounding known toxic waste sites, an unusually high number of people have developed lupus. And yet, the U.S. Department of Environmental Conservation is doubtful that there's a link. Why is that?

Nakazawa:

Clusters are hugely controversial in part because our scientific criteria for proving that exposure A caused disease B in a community are extremely difficult to meet. Autoimmune diseases take years to appear after exposure, and communities are often constantly changing. People move, or die, or their disease is never properly diagnosed. How can we prove, with all these variables, that a toxic exposure in an area caused a group of people to fall ill with a specific set of diseases? Moreover, so much toxic waste exists everywhere, how can we definitively compare what autoimmune disease rates might be in a non-chemically laden area with those in a highly contaminated area when such clear-cut lines rarely exist in the cities and suburbs where we live? So it's very difficult.

Nevertheless, autoimmune clusters have been shown to exist near toxic waste sites in Buffalo, New York; El Paso, Texas; and Morrison, Illinois and its environs. Many more are being investigated, including in Anniston, Alabama, where investigators funded by the Agency for Toxic Substances and Disease Registry are conducting studies to determine whether high rates of autoimmune disease in the area are linked to an industrial manufacturing site where most of the PCBs in the United States were once manufactured and dumped. From Anniston to Buffalo we live in an increasingly complex sea of autogenic agents.

Still, we say we can't "prove" that chemicals are impairing the human immune system. Meanwhile, European environmental policy uses the precautionary principle—an approach to public health that underscores preventing harm to human health before it happens. In June 2007, the European Union implemented legislation known as REACH (the Registration, Evaluation, Authorization and Restriction of Chemical Substances), which requires companies to develop safety data on 30,000 chemicals over the next decade, and places responsibility on the chemical industry to demonstrate the safety of their products. America lags far behind, without any precautionary guidelines regarding chemical use. Obviously, political and economic considerations come into play here. There are over 1,200 "superfund" sites around the U.S.—areas where deadly toxins are known to be seeping into the environment—and these have yet to be cleaned up. At about 10 percent of these sites, people are freely entering the area and being exposed directly to the hazardous waste. Unfortunately, the Environmental Protection Agency does not release information about how much it plans to spend to remediate these sites, when the area will be cleaned up or how long it will take.

Question:

You were twice paralyzed with the autoimmune disease Guillan Barre Syndrome during the writing of this book. How did you recover?

Nakazawa:

Most patients with an autoimmune disease go through terribly difficult times—or flare-ups—which can be quite serious. Getting through a downturn involves a combination of factors. If you know what can contribute to disease it's easier to know how you can help yourself. Months of grueling physical therapy, coupled with IVIG therapies, helped me recover each time I was paralyzed. I also have had to be vigilant about what goes into my body and avoid coming into contact with things that might overstimulate my immune system. Dietary factors, use of household cleaners, emotional stress—these all have to be watched and managed. Also, we do a lot of hand washing in my home, especially when there are colds and flu going around, to minimize any viral hits to my immune system. Studies show that patients with an autoimmune disease also do better if they build a wellness plan that involves reducing stress hormones through a daily habit of meditation and whatever form of exercise they can tolerate. Studies show that autoimmune patients also do much better if they follow "the autoimmune diet," which means consuming foods that are anti-inflammatory. For example, most autoimmune specialists agree that patients should avoid wheat and gluten products and highly processed foods, which can be inflammatory or provoke the immune system to overreact. So one needs to work with a doctor who is open to helping you not just with drugs but also with dietary changes, including making sure you're receiving adequate amounts of the main supplements that have been shown in clinical studies to help autoimmune disease patients, such as omega fatty acids, Vitamin D, antioxidants, probiotics and glucosamine.

Question:

What simple measures can people take in their lives to cut back on toxic exposures and to keep their "barrel" from overflowing?

Nakazawa:

There are a number of choices we can make in everyday life to cut back on our toxic exposures to help empty the barrel. These include:

1. Eat anti-inflammatory foods. According to nutritionists the following foods have anti-inflammatory properties that help to quiet down autoimmune activity. Range-fed beef, lamb, chicken, and turkey; fish with low mercury content such as flounder or talapia; hormone-free eggs; all vegetables (avoiding eggplant and tomatoes which have inflammatory properites); all fresh fruits; unsweetened yogurt; whole-grain breads from alternative nongluten grains; brown rice; beans; nuts, seeds, and sprouts; olive, flaxseed, and sesame oils; and seasonings such as rosemary, thyme and oregano.
2. Avoid processed foods. Consumption of highly preserved bread products, cereals, snacks, and preserved meats and other foods—which are usually full of chemicals, preservatives, and additives—are correlated with rising rates of autoimmune disease in industrialized countries around the world.
3. Choose organic. As you shop for healthy foods, buy organic. Pesticides have been shown in both lab studies of animals and occupational studies of people to be "autogens," or chemicals that can play a role in triggering autoimmunity. Remember to also wash all fruits and vegetables well before you eat them to avoid food-borne illnesses—which can cause or worsen some autoimmune diseases.
4. Consider supplements. Ask your doctor if you could benefit from supplementation with antioxidants, essential fatty acids, Vitamin D, probiotics or glucosamine—all shown in wide-scale studies of patients to be beneficial in curbing the damage of autoimmune disease.
5. Understand the stress connection. Pick up a "stress-relief" habit—daily meditation, a brisk morning walk, yoga—and stick with it. Better yet, do all three. Stress suppresses the immune system's healthy cellular communication and can worsen disease.
6. Clean green. Using non-chemical cleaning products helps to limit the number of "autogens" we come into contact with each day. Since manufacturers of household cleaners are not required to list toxic ingredients on their product labels, it's prudent to replace chemical-based cleaning agents with natural alternatives.
7. Think before you pink. Our skin is the largest organ of the body—and remarkably porous and adept at absorbing toxins. Cosmetic products are full of a disturbing number of chemicals including parabens and phthalates (both known endocrine disruptors). Avoid dark hair dyes, which are linked to higher rates of autoimmune disease, and nail polishes containing phthalates, formaldehyde and tolulene. Look for organic products made by corporations that have joined the Campaign for Safe Cosmetics, or visit www.thinkbeforeyoupink.org for a list of companies that produce products that are paraben and phthalate-free.
8. Wash your hands! Wash your hands routinely and thoroughly throughout the day to help avoid viruses and bacterial infections, both of which can play a role in triggering autoimmune disease. One trick: wash your hands for as long as it takes to mentally hum your ABC's—that's the twenty seconds recommended by the Centers for Disease Control.
9. Make environmentally sound, common-sense choices. Each time you think about purchasing a new item or product, ask yourself whether using it will cause you to be exposed to more harmful chemicals. For instance, drive a few extra blocks (in your hybrid) to use organic dry cleaners; buy wooden toys rather than plastic ones for your children; avoid installing new carpets (which are loaded with flame retardants). If you know that a product is loaded with chemicals—whether it's the trichlorethylene in most dry cleaning or the bisphenol A (BPA) in your plastic water and baby bottles—find an alternative.
10. Relax and find the joy in every day. As you make healthy decisions, avoid living in a state of fear about every potential trigger that might surround you. How optimistically you perceive the world around you also impacts your stress level and your well-being.

We thank Donna Nakazawa for her excellent insights. Click here to read a review of her book.