Chemical toxicity and its affect on YOU.

Sense and Sensitivities
Multiple Chemical Sensitivities can drive sufferers into poverty as well as
ill health
By Todd Hymas
17 Mar 2006

Consider the trappings of modern life: Calvin Klein Eternity, gasoline,
Gore-Tex, Aveda hairspray, paint, particle board, polyurethane iPod cases.

Now imagine that you're allergic to virtually all of them.

Environmentalists usually think about chemical toxicity as either a dramatic
local crisis (Bhopal, Love Canal) or the simmering concern of those far away
(breast-feeding mothers in the Arctic) or far in the future (our oft-evoked
grandchildren). But for people suffering from Multiple Chemical
Sensitivities,
the chemical crisis is already here. Indeed, thanks to industrialization, it
is
already everywhere. And, like so many environment-related health issues, it
disproportionately affects the poor -- and, moreover, drives many once
financially stable people into poverty.

As a disease, Multiple Chemical Sensitivities doesn't have an official case
definition yet (more on this soon), but rather refers to a broad range of
adverse symptoms brought on by an even more broad array of everyday
chemicals.

These symptoms are often provoked at exposure levels far below those that
seem to affect the rest of the population -- levels virtually always present in
our homes, workplaces, and social venues. They commonly include severe
headaches, food intolerances, difficulty breathing, nausea, irritation of the
eyes,
ears,nose, throat, and skin, and disorientation or confusion, but there are many
more.

The best information currently available suggests that MCS is a chronic
condition with no cure. Although some treatments (such as acupuncture) seem
to help some patients, recent surveys by the Chemical Injury Information
Network, a nonprofit education and advocacy organization for people with
chemical
sensitivities, found that avoidance of problem chemicals was the only
consistently effective treatment.

If only avoidance were as simple as it sounds. Just as modern life almost
inevitably involves contributing greenhouse gases to the heating atmosphere,
it is all but impossible to navigate the industrialized world without being
immersed in tens of thousands of potentially troublesome human-made
chemicals.

And just as an honest fight against global warming would pose a huge threat
to powerful energy companies, a real effort to take MCS seriously could throw a
wench into the operations of a huge range of industries that produce
chemicals and chemical-laden products.

Research and You May Not Find

Mainstream medicine has been slow to recognize the role environment can play
in disease. With many doctors either unaware of MCS or doubtful it's a real
condition, simply getting diagnosed is a battle. Even those who recognize the
disease are often unfamiliar with treatment options. As a result, MCS
patients
frequently must visit multiple health-care practitioners -- a process that is
both emotionally and financially costly -- before they can put a name to
their
illness and make the necessary (and often radical and pricey) lifestyle
adaptations it requires.

"Prior to 1988, I was a healthy, athletic physician who played drums in a
rock
band. A year later, I was severely disabled with Multiple Chemical
Sensitivities," wrote Ann McCampbell, a member of the board of the Multiple
Chemical Sensitivities Foundation and chair of the MCS Task Force of New
Mexico, in Focus magazine. "The onset was subtle, with slowly worsening food
intolerances, progressing to the point I could only eat three green
vegetables.
By then I was also having severe reactions to inhaled substances and had
developed headaches, fatigue, heart palpitations, abdominal pains, and
nausea.

Like so many others with MCS, I could no longer tolerate where I lived and
was forced to live outside in my yard, the car, or a makeshift shelter."

Despite some improvements since then, "I go to few places outside my home,"
she wrote, "in order to avoid exposures to cigarette smoke, pesticides,
perfume, vehicle exhaust, cleaning products, and other toxic fumes which make me
sicker."

McCampbell hasn't discovered what triggered her sensitivities, and her
baffling
experience is typical of many others with MCS. The few scientists studying
the disease are baffled as well, struggling to understand its etiology. Current
theories range from a genetic predisposition to chemical injury, to
neurological damage, to abnormalities in detoxifying enzymes, to a so-called
"toxicant-induced loss of tolerance" to environmental stressors, in which one
particular exposure to a toxic substance overwhelms a person's system and
leaves them unable to cope with exposures to a wide range of other toxins.

In fact, doctors have thus far failed to agree on a case definition for the
disease. That's created a catch-22: the lack of a definition makes it more
difficult to secure funding for MCS research, but more research is needed to
better understand and define (not to mention treat and cure) the disease.
"Right now, one of the things MCS [researchers and patients] get hammered on
is that there is no agreed-upon case definition, despite the fact that three
attempts have been made to get the [Centers for Disease Control and
Prevention] to accept one," said Cynthia Wilson, executive director of the
Chemical
Injury Information Network.

Other activists, like McCampbell, stress that there's a working definition of
MCS, and that the lack of a standardized case definition shouldn't be used as
an excuse to halt research or deny patients crucial accommodations.

What few surveys have been conducted on the prevalence of the disease in the
U.S. paint a patchy picture, but hint that it may be relatively widespread. A
1995 survey by the California Department of Health Services found that 6
percent of state residents reported doctor-diagnosed MCS, while a more recent
survey of Atlanta, Ga., area residents published in the May 2004 issue of the
American Journal of Public Health found that 3 percent of respondents
reported receiving an MCS diagnosis.

Home Is Where the Health Is

If those figures are at all representative of the nation as a whole, the
number
of MCS sufferers could range from 9 million to 17 million. Some of them are
undoubtedly able to function with lifestyle adaptations: removing carpet from
their homes, filtering air and water, using ultra-eco-friendly cleansers and
personal-care products, eating organic foods, and limiting contact with toxic
substances like pesticides and solvents. Other patients, however, are far
more
deeply compromised by the disease.


For those in the latter group especially, the No. 1 issue is housing.
"Because
of the nature of construction materials, it's very difficult for people [with
MCS] to find safe housing," says CIIN's Wilson. And without safe refuge, it
is
all but impossible to live a relatively symptom-free life.

Some people with severe MCS try to build or renovate from the ground up,
using exclusively nontoxic materials, but even under the best financial
circumstances this is no small feat. Moreover, people can only exercise so much
control
over their surroundings -- there are neighbors and property owners to worry
about.

"Even if [people with MCS] find safe housing," says Wilson, "it doesn't mean
it
stays safe housing. If, for example, a bug shows up, a landlord typically
wants
to spray a pesticide, [rendering] the housing no good for someone with MCS."

For many without a significant financial safety net, the quest for a safe
space
is maddening -- and the first step on the road to economic ruin. Susan Abod
is
a Santa Fe, N.M.-based vocal artist and filmmaker with MCS whose latest film,
Homesick, documents how people with MCS are affected by their search for
safehousing. The ability to cope with the disease, she says, "has to do with
access to finances and resources. ... If you do have money, you can always find
another home, and you can refurbish it with safe products. But those of us who
don't have access to a lot of money or who are renters or who have assisted
housing from the government [face] a lot more limits."

CIIN's Wilson concurs. "For lower-income people who do not have the
wherewithal to move or to find safe housing, it is a big problem," she says.
"Most
people with MCS end up living in their cars." Others wind up in a friend's
backyard, a stripped-down RV, or a canvas tent on public land. For that reason,
the
housing problem gets worse in winter, says Wilson, "because people can't just
go camping, can't solve their problems by living outdoors."

Nor can they take advantage of traditional safety nets for the homeless.
People with MCS "have to stay away from most chemicals that are on people's
clothes, on people's bodies, and in buildings," says Rhonda Zwillinger, an
artist
and photographer who spent close to a decade interviewing and photographing some
250 people with MCS for The Dispossessed Project, a powerful ongoing photo
essay. (That project was compiled into a book called The Dispossessed: Living
With Multiple Chemical Sensitivities.)

"[The MCS homeless] are mostly not living in urban areas, they're mostly
trying
to live in rural areas where the air is cleaner and the water is cleaner, and
that becomes a problem because the services [for the homeless] are less
available in rural areas," says Zwillinger. "And they can't go into shelters
the way the [non-MCS] homeless can," because in a busy building they would
likely encounter any number of chemicals their bodies can't handle.

It can be even more difficult finding an MCS-safe job. Even if a workplace
itself is a tolerable environment (rare, given the ubiquity of toxic building
materials), basic job-related interactions with the general public can be
impossible. "The way a typical story goes," says Zwillinger, "is that people
lose the ability to make a living because they can't be out in the public
arena" without getting ill. Some MCS patients find a way to work from home
(assuming they've found safe housing) -- but that option is seldom available
to poorer Americans forced to rely on low-wage, low-skill jobs.

"Almost all of us have to make severe accommodations to [MCS], and it does
take a lot of money to successfully do that with any kind of grace," said
Wilson.

"Most people find themselves one day employed and the next day unemployable.
The financial upheaval that this illness causes is heartbreaking."

I Know Why the Caged Bird Stopped Singing

Even chemical companies no longer deny that chemicals accumulate in our
bodies simply by virtue of being alive today. But they insist that the
concentrations are too low to cause any harm. For MCS sufferers, at least, that
reassurance rings brutally hollow.

A well-publicized 2003 study by the Environmental Working Group and Mount
Sinai Hospital in New York found "an average of 91 industrial compounds,
pollutants,and other chemicals in the blood and urine of nine volunteers." Outof
the
210 substances tested for, 167 showed up in at least one of the volunteers.

Meanwhile, the Centers for Disease Control and Prevention's latest National
Report on Human Exposure to Environmental Chemicals contains a detailed
breakdown of 148 different chemicals and substances found in a representative
sample of the U.S. population -- from organochlorine pesticides to dioxins to
metals like cadmium.Very little is known about how individual chemicals
affect the human body, let alone the potential cumulative effects of dozens or
hundreds of interactingchemicals. There are over 80,000 chemicals registered for
use in the United States, with up to 2,500 new ones reviewed by the U.S. EPA
every year, and government oversight is minimal when there's any at all.
Manufacturers are responsible for safety-testing their own products,and they
have no
incentive to look for potential problems -- quite the contrary.

The lack of chemical regulation in the U.S. is perhaps most glaring in the
case
of cosmetics and personal-care products, which, given their ubiquity, are
subject to shockingly lax oversight. The Food and Drug Administration has
nominal authority over them, but little actual regulatory power. Makers of
lotions and potions aren't required to file information on ingredients with
the
government, or report cosmetic-related injuries. The FDA can't mandate safety
studies of cosmetics, and doesn't even have the power to order product
recalls.

"An average adult is exposed to over 100 unique chemicals in personal-care
products every day," says Jane Houlihan, vice president for research at the
Environmental Working Group. "These exposures add up." EWG has been sounding
the alarm on carcinogenic or otherwise worrisome cosmetic ingredients, and has
built an interactive database that ranks shampoos, deodorants, and other
products on their potential harmfulness.

The ubiquity of cosmetics is just one reason people with MCS remain
segregated from society, though there have been some advancements on this front
in
recent years. Some workplaces and schools (like The Evergreen State College in
Olympia, Wash.) have instituted no-fragrance policies -- but in general, those
with MCS cannot count on much help or protection from employers, landlords, the
government, or the medical establishment.

It's a bitter irony, since many with MCS see themselves as canaries in the
modern-day coal mine. As recently as 1986, the exquisitely sensitive yellow
birds were used to detect the presence of dangerous gases in mine shafts, and
when they showed signs of illness -- when they ceased to sing -- it was an
unambiguous warning: evacuate.

As growing numbers of MCS sufferers are driven from their homes and jobs,
pushed to the fringes of medical science and the brink of financial ruin,
made
sick by industrialized civilization itself, we would do well to heed their
equally urgent warning. And fast, because this time around we can't evacuate.

There's nowhere else to go.

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Todd Hymas is Grist's editorial assistant. He's had Multiple Chemical
Sensitivities since 1998.

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