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Diseases Like Mine Are a Growing Hazard

Donna Nakazawa

Sunday, March 16, 2008; B03

http://www.washingtonpost.com/wp-dyn/content/article/2008/03/14/AR2008031403386.\

html

S ome weeks ago, my husband and I treated ourselves to a night at the

movies and caught a showing of " The Diving Bell and the Butterfly, " the

story of a successful French journalist who suffers a massive stroke

that changes his life.

As I watched the opening scene and the moment when the main character

realizes that he's trapped inside his own body, incapable of moving or

communicating with those around him, a shiver of recognition washed over

me. Two years ago, I also lay paralyzed in a hospital bed, unable to use

my arms or legs, to hug my young son or daughter, or to type a word to

meet an impending book deadline. Unlike the movie's protagonist,

however, I was immobilized by a type of disorder that afflicts nearly 24

million Americans -- and counting.

Autoimmune diseases -- a group of about 100 conditions in which the

body's immune system turns on the body itself -- are reaching epidemic

proportions. In the past decade, 15 top medical journals have reported

rising rates of lupus, multiple sclerosis, scleroderma, Crohn's disease,

's disease and polymyositis in industrialized countries around

the world. Over the past 40 years, rates of Type 1 diabetes have

increased fivefold; in children 4 and under, it's increasing 6 percent a

year.

If I wanted to make a movie about my life, I'd pitch it to Hollywood as

" The Diving Bell and the Butterfly " meets " An Inconvenient Truth, " the

Academy Award-winning Al Gore documentary about global warming. Rising

levels of autoimmune disease may well prove to be the next environmental

disaster -- only in this case, the changes taking place degree by degree

are in the interior landscapes of our bodies.

My paralysis was caused by Guillain-Barr¿ syndrome, an autoimmune

disease in which the nerves' myelin sheaths are destroyed by the body's

immune system, short-circuiting messages from the brain to the muscles.

I've been paralyzed twice in the past seven years. Each time, months of

rigorous physical therapy and treatment have enabled me to walk again.

But remnants of the disease -- and other autoimmune conditions that have

simultaneously ravaged my body -- have left me with a pacemaker, little

feeling in my hands and feet, legs that can't ice skate or chase a

child, a low white blood cell count and gastrointestinal problems that

can land me in the hospital in a blink. Still, I consider myself one of

the lucky ones. I know patients who are far less fortunate.

I've spent the past two years interviewing leading experts at top

medical institutions nationwide to find out why cases of autoimmune

disease are skyrocketing. In recent years, many allergists and

immunologists have been attributing the rise to the " hygiene hypothesis "

-- the theory that our germ-free homes and childhood vaccinations have

eliminated challenges to our immune systems so that they don't learn how

to defend us properly when we're young. The scientists I interviewed

tended to discard the idea that this alone is responsible. They agreed

almost to a person that our day-to-day exposure to environmental toxins

-- through the air we breathe and the chemicals we absorb through our

skin -- is a major trigger of autoimmune disease. " Exposures from our

environment are a significant contributor to today's rising rates, " says

Kerr, director of the s Hopkins Transverse Myelitis Center

and a top clinician at the s Hopkins Multiple Sclerosis Center.

In 2003, the Centers for Disease Control and Prevention sampled 2,500

people nationwide looking for the " body burden, " or amount of chemicals

and pollutants each individual carried. They found traces of all 116

chemicals and pollutants they tested for, including PCBs, insecticides,

dioxin, mercury, cadmium and benzene, all highly toxic in higher doses.

Then, in 2005, researchers from the Environmental Working Group found

something more alarming: a cocktail of 287 pollutants -- pesticides,

dioxins, flame retardants -- in the fetal-cord blood of 10 newborn

infants from around the country.

Because most toxins are found in only trace amounts, it has been

difficult to gauge what effect they might be having on our health. Yet

studies of both lab animals and people provide disturbing insights into

how even low exposures can cause our immune systems to go haywire. Mice

exposed to pesticides at levels four times lower than the level the

Environmental Protection Agency sets as acceptable for humans are more

susceptible to getting lupus than control mice. Mice that absorb low

doses of trichloroethylene -- a chemical used in dry cleaning, household

paint thinners, glues and adhesives -- at levels the EPA deems safe and

equal to what a factory worker might encounter today, quickly develop

autoimmune hepatitis. And low doses of perfluorooctanoic acid, a

breakdown chemical of Teflon found in 96 percent of humans tested for

it, impair rats' development of a proper immune system.

Evidence from occupational studies is even more worrisome -- because the

" guinea pigs " are people. Last year, scientists from the National

Institutes of Health and the University of Washington released the

findings of a 14-year study of 300,000 death certificates in 26 states:

Those who worked with pesticides, textiles, solvents, benzene, asbestos

and other compounds were significantly more likely to die from an

autoimmune disease than people who didn't. Other recent studies show

links between working with solvents, asbestos, PCBs and vinyl chloride

and a greater likelihood of developing autoimmune disease.

Proving an absolute link between chemicals and autoimmune disorders in

humans won't be easy. Researchers can expose rodents to low doses of

chemicals and look for signs of autoimmune disease about six weeks to

three months later. But in humans, autoimmune diseases are long,

slow-brewing conditions that smolder for a decade or more before

symptoms appear. Moreover, Kerr says, it may be that a combination of

exposures rather than a single acute dose increases the risk of

autoimmune disease.

Meanwhile, we may all be unwitting participants in an uncontrolled

experiment as we wait to see whether rising levels of toxins and

pollutants in our blood are the cause of climbing rates of autoimmune

disease. Our children are the high-stakes pawns in this game: Pound for

pound, they eat more food and drink more water than adults, and their

immune systems are still developing and vulnerable.

What can we do to lower the stakes for future generations? We could take

a page from European environmental policy and its " precautionary

principle " of preventing harm before it occurs. Last June, the European

Union implemented legislation that 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 its products.

We also need to look beyond the " hygiene hypothesis " as the sole

explanation for the autoimmune epidemic and wake up to what

immunotoxicologists have been telling us for years: Our immune systems

may be less prepared because we're confronting fewer natural pathogens,

but we're also encountering an endless barrage of artificial pathogens

that are taxing our systems to the maximum.

Finally, we've waited too long for Congress to allocate funding to

finding out what toxic exposures can cause our immune systems to turn

against us. Though it estimates that 24 million Americans suffer from

autoimmunity, the NIH spent only $591.2 million on autoimmune disease

research in 2003, the last year for which figures are available,

compared with the $5 billion annual budget for cancer, which afflicts 9

million. The NIH budget for cardiovascular disease, affecting 22 million

Americans, is four times that of autoimmune diseases.

My health right now is stable. There are challenges, to be sure -- I

type these words with braces on my arms. But my legs take me where I

need to go. Still, I live in fear of the day when that creeping

paralysis could steal my life away again. Only if we take concrete steps

now will the movie of my life and that of millions of other Americans

have a chance at a happy ending.

jacksondj@...

Donna Nakazawa is the author of " The Autoimmune Epidemic: Bodies

Gone Haywire in a World Out of Balance -- and the Cutting Edge Science

that Promises Hope. "

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