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The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of

Balance

By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

Posted on March 19, 2008, Printed on March 26, 2008

http://www.alternet.org/story/80129/

Excerpted from The Autoimmune Epidemic: Bodies Gone Haywire in a World

Out of Balance--and the Cutting-Edge Science that Promises Hope

(Touchstone/Simon & Schuster).

Reprinted with permission. An interview with the author follows.

 

Most of us, at some juncture in our lives, have played out in our minds

how devastating it would be to have our doctor hand down a cancer

diagnosis or to warn us that we are at risk for a heart attack or stroke.

Magazine articles, television dramas, and news headlines all bring such

images home.

But consider an equally devastating health crisis scenario, one that you

rarely hear spoken about openly, one that receives almost no media

attention.

Imagine the slow, creeping escalation of seemingly amorphous symptoms: a

tingling in the arms and fingers, the sudden appearance of a speckled

rash across the face, the strange muscle weakness in the legs when

climbing stairs, the fiery joints that emerge out of nowhere -- any and

all of which can signal the onset of a wide range of life-altering and

often debilitating autoimmune diseases.

Imagine, if you can: the tingling foot and ankle that turns out to be the

beginning of the slow paralysis of multiple sclerosis. Four hundred

thousand patients. Excruciating joint pain and inflammation, skin rashes,

and never-ending flu-like symptoms that lead to the diagnosis of lupus.

One and a half million more. Relentless bouts of vertigo -- the hallmark

of Ménière's. Seven out of every one thousand Americans. Severe abdominal

pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic

intestinal inflammation that define Crohn's disease and inflammatory

bowel disease. More than 1 million Americans.More than 2 million

patients. Dry mouth so persistent eight glasses of water a day won't

soothe the parched throat and tongue and the mysterious swallowing

difficulties that are the first signs of Sjögren's. Four million

Americans. And, with almost every autoimmune disease, intolerable,

life-altering bouts of exhaustion. If fatigue were a sound made manifest

by the 23.5 million people with autoimmune disease in America, the roar

across this country would be more deafening than that of the return of

the seventeen-year locusts.

And yet, despite the prevalence of autoimmune disease, surveys show that

more than 90 percent of people cannot summon the name of a single

autoimmune disease when asked to name one specifically.

Think of it -- other than walkathons for multiple sclerosis, how many

fundraising walks or lapel ribbons have you seen for autoimmune disease

in general? Nearly 24 million Americans are suffering from an autoimmune

illness, yet nine out of ten Americans cannot name a single one of these

diseases. It boggles the mind.

Each of these nearly 100 autoimmune diseases derails lives. Taken

collectively, these diseases, which also include type 1 diabetes, Graves'

disease, vasculitis, myasthenia gravis, connective tissue diseases,

autoimmune Addison's disease, vitiligo, rheumatoid arthritis, hemolytic

anemia, celiac disease, and scleroderma are now the Number Two cause of

chronic illness in America and the third leading cause of Social Security

disability behind heart disease and cancer. (Acquired immune deficiency

syndrome, or AIDS, by contrast, is not an autoimmune disease; in fact, it

is entirely different. In AIDS a virus attacks the immune system and

destroys it, whereas in autoimmune disease, the immune system leads the

attack, mistaking the body's tissue for an invader and turning on the

body itself.)

Autoimmune diseases are the eighth leading cause of death among women,

shortening the average patient's lifespan by fifteen years. Not

surprisingly, the economic burden is staggering: autoimmune diseases

represent a yearly health-care burden of more than $120 billion, compared

to the yearly health-care burden of $70 billion for direct medical costs

for cancer.

To underscore these numbers, consider: while 2.2 million women are living

with breast cancer and 7.2 million women have coronary disease, an

estimated 9.8 million women are afflicted with one of the seven more

common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis,

multiple sclerosis, inflammatory bowel disease, Sjögren's, and type 1

diabetes. All of these can lead to potentially fatal

complications.

Or slice these statistics another way: while one in 69 women below the

age of fifty will be diagnosed with breast cancer, according to

estimates, as many as one in nine women of childbearing years will be

diagnosed with an autoimmune illness, which strike three times as many

women as men -- and most often strike patients in their prime. According

to the National Institutes of Health, autoimmune disease affects far more

patients than the 9 million Americans who have cancer and the 16 million

with coronary disease.

" The Western Disease " : A Rising Epidemic Underrecognized and

Underaddressed

Even as autoimmune diseases remain underrecognized and underaddressed,

the number of patients afflicted with these illnesses has been steadily

growing. Yet few of today's practicing physicians are aware of the

escalating tsunami of epidemiological evidence that now concerns top

scientists at every major research institute around the world: evidence

that autoimmune diseases such as lupus, MS, scleroderma, and many others

are on the rise and have been for the past four decades in industrialized

countries around the world.

Mayo Clinic researchers report that the incidence of lupus has nearly

tripled in the United States over the past four decades. Their findings

are all the more alarming when you consider that their research has been

conducted among a primarily white population at a time when many

researchers believe lupus rates are rising most significantly among

African Americans.

Over the past fifty years multiple sclerosis rates have tripled in

Finland. Rates have likewise been rising in Scotland, England, the

Netherlands, Denmark, and Sweden, where the number of people with MS has

been rising at nearly 3 percent a year. Multiple sclerosis rates in

Norway have risen 30 percent since 1963, echoing trends in Germany,

Italy, and Greece, where MS rates have doubled over the past thirty to

forty years.

Rates of type 1 diabetes are perhaps the most telling. Data over the past

forty years show that type 1 diabetes, a disease in which immune cells

attack the insulin-producing beta cells in the pancreas, has increased

fivefold. The story regarding childhood-onset type 1 diabetes is more

disturbing. Studies show that the number of children with type 1 diabetes

is skyrocketing, with rates increasing 6 percent a year in children four

and under and 4 percent in children aged 10 to 14.

Rates of numerous other autoimmune diseases -- scleroderma, Crohn's

disease, autoimmune Addison's disease, and polymyositis -- show the same

alarming pattern.

As with all epidemiological research, it can be more art than science to

tease out what percentage of these rising rates is the result of more

people being diagnosed with a disease because physicians are more aware

of it, versus the increase from a genuine rise in the number of people

falling ill. Yet the researchers behind these epidemiological studies

hold that something more than an improved ability among doctors to

diagnose autoimmune diseases is driving these numbers upward.

Norwegian epidemiologists, for instance, argue that rising rates are

" due to a real biological change of the disease " rather than

being caused solely by better diagnostics and are concerned by the higher

occurrence of autoimmunity in urban than in rural areas. Swedish and

German researchers concur that enhanced diagnostics alone cannot explain

today's significant increases in MS.

Type 1 diabetes researchers insist that today's rapid rise in this

disease cannot be explained by either better diagnostics or by more

people suddenly becoming genetically susceptible to type 1 diabetes;

rather, a change in environmental factors is the " more plausible

explanation. " At the Mayo Clinic researchers are beginning to ask if

rising rates of lupus are the result of an increased exposure to

environmental triggers of some unknown origin. Because autoimmune disease

is spreading in almost every industrialized nation, scientists the world

over have dubbed it " the Western disease. "

A Growing Autoimmune Patient Load, An Autoimmune-Disease Crisis in the

Making

While epidemiological studies provide a global portrait of an

autoimmune-disease crisis in the making, it is through patients' eyes

that it takes on more personal meaning. And nowhere is this more evident

than at the offices of Dr. Michelle Petri, clinical director of the Johns

Hopkins Lupus Center, at the Johns Hopkins Outpatient Center in downtown

Baltimore, Maryland. Dr. Petri is a heavy hitter in the field of

rheumatology and a nationally known speaker on lupus. Many of the people

she treats have waited months for an appointment in order to confirm a

diagnosis or gain better treatment for such rheumatic autoimmune diseases

as lupus and antiphospholipid syndrome. Some of them are local residents

who live merely a few blocks away from her office, while other patients

fly thousands of miles to see her.

Over the course of her thirty-year career, Petri has witnessed a dramatic

rise in patients with lupus. In the 1960s there were only 150 to 200

lupus patients registered in the Hopkins Rheumatology Clinics. Today,

there are 1,700 lupus patients registered from the immediate neighborhood

alone. " The population in Baltimore is going down, and yet the

number of people coming to our clinic from Baltimore with autoimmune

disease is going up, " she says.

In an administrative building nearby sits the lupus clinic records room.

In the twenty-by-twenty-foot space loom four walls of filing cabinets --

enough to easily fill up the four walls in your local 7-Eleven -- packed

with patient files that, twenty years ago, would have fit neatly into a

few metal drawers. Although Petri has no way of conducting formal

epidemiologic research through her clinic, the continued rise in the

percent of patients afflicted in her own small urban area is, she says, a

" very disturbing " sign.

Certainly, some of the increase that Petri and other clinicians are

seeing in lupus is due to the improved treatment many patients receive

through kidney dialysis and transplants, which help them live longer (the

longer patients survive, the larger the overall patient number). And the

skill with which physicians diagnose lupus has improved somewhat in many

large metropolitan hospital centers. However, this increase in lupus

" is so enormous, " says Petri, part of it can only be explained

by an increase in the incidence of lupus itself.

Petri's emphatic tone reveals her concern for her patients' well-being as

well as her frustration over how little physicians understand about why

so many people's immune systems are attacking their own healthy tissue.

The fact that so many front-line practitioners are ill trained in how to

diagnose these diseases can result in patients facing costly delays --

both physically and emotionally -- in getting the help they

need.

One of these patients was Kathleen Arntsen, a 44-year-old sales

professional from Verona, New York. After five years of searching for a

diagnosis for what would turn out later to be myasthenia gravis, a

disease in which sufferers develop severe muscle fatigue and disabling

weakness, Kathleen was told by a doctor she'd been to eight times,

" We've given you every test known to man except for an autopsy.

Would you like one of those too? " For half a decade, she says,

" I was treated like an absolute fruitcake. No one could tell me what

was wrong with me, much less treat me. "

Arntsen's story is not unusual. The average patient with autoimmune

disease sees six doctors before attaining a correct diagnosis. Recent

surveys conducted by the American Autoimmune Related Diseases Association

reveal that 45 percent of patients with autoimmune diseases have been

labeled hypochondriacs in the earliest stages of their illnesses. Some of

this, no doubt, has to do with the fact that 75 percent to 80 percent of

autoimmune disease sufferers are women, who are more easily dismissed by

the medical establishment when hard-to-diagnose symptoms arise. In half

of all cases, women with autoimmune disease are told there is nothing

wrong with them for an average of five years before receiving diagnosis

and treatment. Patients -- most especially women -- are often left

feeling both confused and marginalized, or worse, labeled as

psychosomatic malingerers.

Arntsen was fortunate to find her way eventually to Johns Hopkins

University's neuromuscular clinic and later to Michelle Petri for

confirmation, consultation, and validation regarding her polyautoimmune

disorders, which include lupus, Sjögrens, Graves' thyroid disease, APS,

psoriasis, Raynaud's disease, and myasthenia gravis. Yet despite having

an accurate set of diagnoses, Arntsen's autoimmune illnesses have forced

her to give up almost everything she once equated with normal life in

order to preserve the stamina to get through each day. Once a healthy

young woman on a full scholarship to Colgate University, where she was

captain of the women's rugby team, Arntsen now has to stop and pick up

each knee as she goes up the stairs. " I coexist, " she says,

" with bone-gnawing pain. " For years, her long flame of red

hair, which once reached her tailbone, turned scarce and thin, the

fallout of her autoimmune thyroiditis, coupled with drug side effects. In

the past decade she has spent almost a year and a half in the hospital

during her most severe lupus flares. Although she is carefully monitored,

there is little the medical establishment can offer Kathleen for her

lupus and myasthenia gravis other than steroids, a healthy diet, and

boatloads of rest -- especially since no new U.S. Food and Drug

Administration-approved drugs have been developed for lupus in more than

forty years.

Kathleen's debility and exhaustion, which have taken a permanent toll on

her life and career, will never go away. A top-performing sales rep for

an insurance company while in her thirties, Arntsen, who used to run

three miles a day, now lives on Social Security disability -- which, she

says ruefully, allows time for " my new full-time job -- seeing

specialists. " She gets going each day by around noon and spends what

stamina she has left volunteering at the Lupus Foundation of Mid and

Northern New York, which has become her " baby, " although it can

hardly begin to make up for the fact that " the chance to be a mother

has been stolen from me. " The best Kathleen and her husband of

fifteen years can hope for is that with the careful monitoring of diet,

stress, and sleep, she will have more good days than bad.

To look at Kathleen, however, you would never guess what she has been

through or what she faces each morning at the start of her day. Like many

people who suffer from autoimmune diseases, Kathleen's symptoms remain

largely invisible. " Because we go through ups and downs, you might

see us on a good day, between severe flares, when we seem to be perfectly

fine, " she says. " You don't know that we've just spent six

weeks in hell. " Few can imagine, she adds, that behind her bedroom

door even on one of these good days, Kathleen has to take twenty-two

medications about an hour before she tries to get up, just so she can

handle the pain when her feet hit the floor. " By the time you run

into me at the grocery store at two o'clock in the afternoon and say

hello to me, I'm ready to nod and say, 'Oh, I'm fine, how are

you?' "

© 2008 Donna Jackson Nakazawa.

*****

Q & A 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).

Q. 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 treatment. 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.

Q. 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 1700 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.

Q. 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.

Q. 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.

Q. 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 1200 " 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.

 

Q. 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 treatments, 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 treating 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.

© 2008 Touchstone/Simon & Schuster All rights reserved.

View this story online at:

http://www.alternet.org/story/80129/

 

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At 01:45 PM 3/26/2008, you wrote:

Very interesting article - long, but interesting, and pretty

inclusive.....I thought it was a very good description of a number of

factors people with autoimmune diseases deal with. There's one other

thing I've noticed, particularly with people (mostly women) who have MS.

Just about every single women I've ever met who had MS, was a go-getter.

The type of woman who would have made it to CEO. Active, and most had

full lives. Many were by nature very competitive. I don't know why this

is, but with a few exceptions, this has struck me every time I meet a

group of people who have MS. It's really odd to have a man in the group

who has MS. Of course, there are men, but the percentage is very small.

 

Although I hadn't seen any statistics, I've often wondered why it seemed

so many more people seem to have one or more autoimmune disease. On the

one hand, it's nice to know my perception wasn't off, but on the other,

am sad to see my perception verified. I think stress had an enormous

impact on my body, and think, ultimately, may have been the

trigger. I still find, often AFTER a period of extreme stress, I get an

exacerbation. It's almost as though my body kicks in and holds me

together while the stress is going on, but once it slacks up, my body

lets loose. Unless, there is an extended period of extreme stress, at

which point there seems to be only so much my body can handle any more.

People tell me they think I'm strong. I don't think so. I think it's more

a question of survival....

I've also wondered if there hasn't been something in our environment

which has caused the upswing in autoimmune diseases. Or a combination of

things. At one point, I've also thought perhaps more people are being

diagnosed, when in the past, whatever they had was either ignored, or

considered a " hysterical " disease. It's not uncommon for

doctors, when they can't find anything, to say or imply that what is

going on is a function of that person being a woman. It's not as common

for a doctor to treat a man differently, and give more credence to his

symptoms than he would for a woman. I'm hoping it happens less now-a-days

than it did 20, 30 or 40 years ago. but, suspect it still happens far too

often.

One thing - for a long time pain was not considered a symptom or side

effect of diseases like MS. In fact, when I was diagnosed many years ago,

many, if not most physicians did not believe pain could be part of MS. My

symptomology was atypical (which I'm sure comes as no surprise to

anyone...*grin*), so it took a while until they figured out what was

going on.

Anyway, thanks for the article. It sounds as though the book will

be very good if the article is an indication.

Lynn

 

 

The Autoimmune Epidemic: Bodies

Gone Haywire in a World Out of Balance

By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

Posted on March 19, 2008, Printed on March 26, 2008

 

http://www.alternet.org/story/80129/

Excerpted from The Autoimmune Epidemic: Bodies Gone Haywire in a World

Out of Balance--and the Cutting-Edge Science that Promises Hope

(Touchstone/Simon & Schuster).

Reprinted with permission. An interview with the author follows.

 

Most of us, at some juncture in our lives, have played out in our minds

how devastating it would be to have our doctor hand down a cancer

diagnosis or to warn us that we are at risk for a heart attack or stroke.

Magazine articles, television dramas, and news headlines all bring such

images home.

But consider an equally devastating health crisis scenario, one that you

rarely hear spoken about openly, one that receives almost no media

attention.

Imagine the slow, creeping escalation of seemingly amorphous symptoms: a

tingling in the arms and fingers, the sudden appearance of a speckled

rash across the face, the strange muscle weakness in the legs when

climbing stairs, the fiery joints that emerge out of nowhere -- any and

all of which can signal the onset of a wide range of life-altering and

often debilitating autoimmune diseases.

 

Imagine, if you can: the tingling foot and ankle that turns out to be the

beginning of the slow paralysis of multiple sclerosis. Four hundred

thousand patients. Excruciating joint pain and inflammation, skin rashes,

and never-ending flu-like symptoms that lead to the diagnosis of lupus.

One and a half million more. Relentless bouts of vertigo -- the hallmark

of Ménière's. Seven out of every one thousand Americans. Severe abdominal

pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic

intestinal inflammation that define Crohn's disease and inflammatory

bowel disease. More than 1 million Americans.More than 2 million

patients. Dry mouth so persistent eight glasses of water a day won't

soothe the parched throat and tongue and the mysterious swallowing

difficulties that are the first signs of Sjögren's. Four million

Americans. And, with almost every autoimmune disease, intolerable,

life-altering bouts of exhaustion. If fatigue were a sound made manifest

by the 23.5 million people with autoimmune disease in America, the roar

across this country would be more deafening than that of the return of

the seventeen-year locusts.

And yet, despite the prevalence of autoimmune disease, surveys show that

more than 90 percent of people cannot summon the name of a single

autoimmune disease when asked to name one specifically.

Think of it -- other than walkathons for multiple sclerosis, how many

fundraising walks or lapel ribbons have you seen for autoimmune disease

in general? Nearly 24 million Americans are suffering from an autoimmune

illness, yet nine out of ten Americans cannot name a single one of these

diseases. It boggles the mind.

Each of these nearly 100 autoimmune diseases derails lives. Taken

collectively, these diseases, which also include type 1 diabetes, Graves'

disease, vasculitis, myasthenia gravis, connective tissue diseases,

autoimmune Addison's disease, vitiligo, rheumatoid arthritis, hemolytic

anemia, celiac disease, and scleroderma are now the Number Two cause of

chronic illness in America and the third leading cause of Social Security

disability behind heart disease and cancer. (Acquired immune deficiency

syndrome, or AIDS, by contrast, is not an autoimmune disease; in fact, it

is entirely different. In AIDS a virus attacks the immune system and

destroys it, whereas in autoimmune disease, the immune system leads the

attack, mistaking the body's tissue for an invader and turning on the

body itself.)

Autoimmune diseases are the eighth leading cause of death among women,

shortening the average patient's lifespan by fifteen years. Not

surprisingly, the economic burden is staggering: autoimmune diseases

represent a yearly health-care burden of more than $120 billion, compared

to the yearly health-care burden of $70 billion for direct medical costs

for cancer.

To underscore these numbers, consider: while 2.2 million women are living

with breast cancer and 7.2 million women have coronary disease, an

estimated 9.8 million women are afflicted with one of the seven more

common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis,

multiple sclerosis, inflammatory bowel disease, Sjögren's, and type 1

diabetes. All of these can lead to potentially fatal

complications.

Or slice these statistics another way: while one in 69 women below the

age of fifty will be diagnosed with breast cancer, according to

estimates, as many as one in nine women of childbearing years will be

diagnosed with an autoimmune illness, which strike three times as many

women as men -- and most often strike patients in their prime. According

to the National Institutes of Health, autoimmune disease affects far more

patients than the 9 million Americans who have cancer and the 16 million

with coronary disease.

" The Western Disease " : A Rising Epidemic Underrecognized and

Underaddressed

Even as autoimmune diseases remain underrecognized and underaddressed,

the number of patients afflicted with these illnesses has been steadily

growing. Yet few of today's practicing physicians are aware of the

escalating tsunami of epidemiological evidence that now concerns top

scientists at every major research institute around the world: evidence

that autoimmune diseases such as lupus, MS, scleroderma, and many others

are on the rise and have been for the past four decades in industrialized

countries around the world.

Mayo Clinic researchers report that the incidence of lupus has nearly

tripled in the United States over the past four decades. Their findings

are all the more alarming when you consider that their research has been

conducted among a primarily white population at a time when many

researchers believe lupus rates are rising most significantly among

African Americans.

Over the past fifty years multiple sclerosis rates have tripled in

Finland. Rates have likewise been rising in Scotland, England, the

Netherlands, Denmark, and Sweden, where the number of people with MS has

been rising at nearly 3 percent a year. Multiple sclerosis rates in

Norway have risen 30 percent since 1963, echoing trends in Germany,

Italy, and Greece, where MS rates have doubled over the past thirty to

forty years.

Rates of type 1 diabetes are perhaps the most telling. Data over the past

forty years show that type 1 diabetes, a disease in which immune cells

attack the insulin-producing beta cells in the pancreas, has increased

fivefold. The story regarding childhood-onset type 1 diabetes is more

disturbing. Studies show that the number of children with type 1 diabetes

is skyrocketing, with rates increasing 6 percent a year in children four

and under and 4 percent in children aged 10 to 14.

Rates of numerous other autoimmune diseases -- scleroderma, Crohn's

disease, autoimmune Addison's disease, and polymyositis -- show the same

alarming pattern.

As with all epidemiological research, it can be more art than science to

tease out what percentage of these rising rates is the result of more

people being diagnosed with a disease because physicians are more aware

of it, versus the increase from a genuine rise in the number of people

falling ill. Yet the researchers behind these epidemiological studies

hold that something more than an improved ability among doctors to

diagnose autoimmune diseases is driving these numbers upward.

Norwegian epidemiologists, for instance, argue that rising rates are

" due to a real biological change of the disease " rather than

being caused solely by better diagnostics and are concerned by the higher

occurrence of autoimmunity in urban than in rural areas. Swedish and

German researchers concur that enhanced diagnostics alone cannot explain

today's significant increases in MS.

Type 1 diabetes researchers insist that today's rapid rise in this

disease cannot be explained by either better diagnostics or by more

people suddenly becoming genetically susceptible to type 1 diabetes;

rather, a change in environmental factors is the " more plausible

explanation. " At the Mayo Clinic researchers are beginning to ask if

rising rates of lupus are the result of an increased exposure to

environmental triggers of some unknown origin. Because autoimmune disease

is spreading in almost every industrialized nation, scientists the world

over have dubbed it " the Western disease. "

A Growing Autoimmune Patient Load, An Autoimmune-Disease Crisis in the

Making

While epidemiological studies provide a global portrait of an

autoimmune-disease crisis in the making, it is through patients' eyes

that it takes on more personal meaning. And nowhere is this more evident

than at the offices of Dr. Michelle Petri, clinical director of the Johns

Hopkins Lupus Center, at the Johns Hopkins Outpatient Center in downtown

Baltimore, Maryland. Dr. Petri is a heavy hitter in the field of

rheumatology and a nationally known speaker on lupus. Many of the people

she treats have waited months for an appointment in order to confirm a

diagnosis or gain better treatment for such rheumatic autoimmune diseases

as lupus and antiphospholipid syndrome. Some of them are local residents

who live merely a few blocks away from her office, while other patients

fly thousands of miles to see her.

Over the course of her thirty-year career, Petri has witnessed a dramatic

rise in patients with lupus. In the 1960s there were only 150 to 200

lupus patients registered in the Hopkins Rheumatology Clinics. Today,

there are 1,700 lupus patients registered from the immediate neighborhood

alone. " The population in Baltimore is going down, and yet the

number of people coming to our clinic from Baltimore with autoimmune

disease is going up, " she says.

In an administrative building nearby sits the lupus clinic records room.

In the twenty-by-twenty-foot space loom four walls of filing cabinets --

enough to easily fill up the four walls in your local 7-Eleven -- packed

with patient files that, twenty years ago, would have fit neatly into a

few metal drawers. Although Petri has no way of conducting formal

epidemiologic research through her clinic, the continued rise in the

percent of patients afflicted in her own small urban area is, she says, a

" very disturbing " sign.

Certainly, some of the increase that Petri and other clinicians are

seeing in lupus is due to the improved treatment many patients receive

through kidney dialysis and transplants, which help them live longer (the

longer patients survive, the larger the overall patient number). And the

skill with which physicians diagnose lupus has improved somewhat in many

large metropolitan hospital centers. However, this increase in lupus

" is so enormous, " says Petri, part of it can only be explained

by an increase in the incidence of lupus itself.

Petri's emphatic tone reveals her concern for her patients' well-being as

well as her frustration over how little physicians understand about why

so many people's immune systems are attacking their own healthy tissue.

The fact that so many front-line practitioners are ill trained in how to

diagnose these diseases can result in patients facing costly delays --

both physically and emotionally -- in getting the help they

need.

One of these patients was Kathleen Arntsen, a 44-year-old sales

professional from Verona, New York. After five years of searching for a

diagnosis for what would turn out later to be myasthenia gravis, a

disease in which sufferers develop severe muscle fatigue and disabling

weakness, Kathleen was told by a doctor she'd been to eight times,

" We've given you every test known to man except for an autopsy.

Would you like one of those too? " For half a decade, she says,

" I was treated like an absolute fruitcake. No one could tell me what

was wrong with me, much less treat me. "

Arntsen's story is not unusual. The average patient with autoimmune

disease sees six doctors before attaining a correct diagnosis. Recent

surveys conducted by the American Autoimmune Related Diseases Association

reveal that 45 percent of patients with autoimmune diseases have been

labeled hypochondriacs in the earliest stages of their illnesses. Some of

this, no doubt, has to do with the fact that 75 percent to 80 percent of

autoimmune disease sufferers are women, who are more easily dismissed by

the medical establishment when hard-to-diagnose symptoms arise. In half

of all cases, women with autoimmune disease are told there is nothing

wrong with them for an average of five years before receiving diagnosis

and treatment. Patients -- most especially women -- are often left

feeling both confused and marginalized, or worse, labeled as

psychosomatic malingerers.

Arntsen was fortunate to find her way eventually to Johns Hopkins

University's neuromuscular clinic and later to Michelle Petri for

confirmation, consultation, and validation regarding her polyautoimmune

disorders, which include lupus, Sjögrens, Graves' thyroid disease, APS,

psoriasis, Raynaud's disease, and myasthenia gravis. Yet despite having

an accurate set of diagnoses, Arntsen's autoimmune illnesses have forced

her to give up almost everything she once equated with normal life in

order to preserve the stamina to get through each day. Once a healthy

young woman on a full scholarship to Colgate University, where she was

captain of the women's rugby team, Arntsen now has to stop and pick up

each knee as she goes up the stairs. " I coexist, " she says,

" with bone-gnawing pain. " For years, her long flame of red

hair, which once reached her tailbone, turned scarce and thin, the

fallout of her autoimmune thyroiditis, coupled with drug side effects. In

the past decade she has spent almost a year and a half in the hospital

during her most severe lupus flares. Although she is carefully monitored,

there is little the medical establishment can offer Kathleen for her

lupus and myasthenia gravis other than steroids, a healthy diet, and

boatloads of rest -- especially since no new U.S. Food and Drug

Administration-approved drugs have been developed for lupus in more than

forty years.

Kathleen's debility and exhaustion, which have taken a permanent toll on

her life and career, will never go away. A top-performing sales rep for

an insurance company while in her thirties, Arntsen, who used to run

three miles a day, now lives on Social Security disability -- which, she

says ruefully, allows time for " my new full-time job -- seeing

specialists. " She gets going each day by around noon and spends what

stamina she has left volunteering at the Lupus Foundation of Mid and

Northern New York, which has become her " baby, " although it can

hardly begin to make up for the fact that " the chance to be a mother

has been stolen from me. " The best Kathleen and her husband of

fifteen years can hope for is that with the careful monitoring of diet,

stress, and sleep, she will have more good days than bad.

To look at Kathleen, however, you would never guess what she has been

through or what she faces each morning at the start of her day. Like many

people who suffer from autoimmune diseases, Kathleen's symptoms remain

largely invisible. " Because we go through ups and downs, you might

see us on a good day, between severe flares, when we seem to be perfectly

fine, " she says. " You don't know that we've just spent six

weeks in hell. " Few can imagine, she adds, that behind her bedroom

door even on one of these good days, Kathleen has to take twenty-two

medications about an hour before she tries to get up, just so she can

handle the pain when her feet hit the floor. " By the time you run

into me at the grocery store at two o'clock in the afternoon and say

hello to me, I'm ready to nod and say, 'Oh, I'm fine, how are

you?' "

© 2008 Donna Jackson Nakazawa.

*****

Q & A 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).

 

Q. 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 treatment. 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.

Q. 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 1700 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.

Q. 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.

Q. 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.

Q. 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 1200 " 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.

 

Q. 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 treatments, 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 treating 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.

© 2008 Touchstone/Simon & Schuster All rights reserved.

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http://www.alternet.org/story/80129/

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Just thought I would make a comment on the MS thing as it is a concern in my family as my step-sons' mother had MS and died from its complications.

 

She was definitely not a go getter; never was in her life. In fact she was the type that wanted to be taken care of for everything. Once she was diagnosed with MS she wanted the boys and her ex-sister-in-laws to take care of her and her home.

 

I was told that this attitude was probably why she went down hill so fast and ended up in a nursing home.

 

BUT it doesn't explain her getting the disease in the first place as she was definitely not a go-getter!

 

Jackie

 

-

Lynn Ward

Wednesday, March 26, 2008 10:42 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

At 01:45 PM 3/26/2008, you wrote:Very interesting article - long, but interesting, and pretty inclusive.....I thought it was a very good description of a number of factors people with autoimmune diseases deal with. There's one other thing I've noticed, particularly with people (mostly women) who have MS. Just about every single women I've ever met who had MS, was a go-getter. The type of woman who would have made it to CEO. Active, and most had full lives. Many were by nature very competitive. I don't know why this is, but with a few exceptions, this has struck me every time I meet a group of people who have MS. It's really odd to have a man in the group who has MS. Of course, there are men, but the percentage is very small.

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Jacquie was she someone who was always taking diet drinks and food with the likelihood of sweeteners being part of her everyday diet? I didn't read the article you refer to but I feel that the type of personality which wants to be looked after is more likely to develop MS & similar diseases especially if they don't get as much "looking after" as they feel they deserve.

 

Best,

 

Jane

 

-

Jackie Davis

Thursday, March 27, 2008 10:58 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

 

Just thought I would make a comment on the MS thing as it is a concern in my family as my step-sons' mother had MS and died from its complications.

 

She was definitely not a go getter; never was in her life. In fact she was the type that wanted to be taken care of for everything. Once she was diagnosed with MS she wanted the boys and her ex-sister-in-laws to take care of her and her home.

 

I was told that this attitude was probably why she went down hill so fast and ended up in a nursing home.

 

BUT it doesn't explain her getting the disease in the first place as she was definitely not a go-getter!

 

Jackie

 

-

Lynn Ward

Wednesday, March 26, 2008 10:42 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

At 01:45 PM 3/26/2008, you wrote:Very interesting article - long, but interesting, and pretty inclusive.....I thought it was a very good description of a number of factors people with autoimmune diseases deal with. There's one other thing I've noticed, particularly with people (mostly women) who have MS. Just about every single women I've ever met who had MS, was a go-getter. The type of woman who would have made it to CEO. Active, and most had full lives. Many were by nature very competitive. I don't know why this is, but with a few exceptions, this has struck me every time I meet a group of people who have MS. It's really odd to have a man in the group who has MS. Of course, there are men, but the percentage is very small.

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At 07:58 AM 3/27/2008, you wrote:

Interesting....I don't actually think a certain personality type is more

prone to getting MS - even though it's kind of seemed to me to be that

way. There isn't enough information yet to make such a determination.

I've just found it interesting, that most of the people, mostly women ,

who I've met that had the disease, had certain personality traits in

common.

The women I met were all through a group or aqua exercise. While

certainly not inclusive of all who get MS, over the last 20 years, I've

probably met several hundred women and a handful of men with MS in

varying stages.. Most were what I described - the go-getter type.

However, it could certainly be that the go-getter type is the type who

would go to self-help groups and exercise.....I'm guessing that someone

who wants to be taken care of wouldn't participate in those types of

groups. Why should they? If all they want is to be taken care of and not

learn ways of doing that yourself......Most of the people, both men and

women, that I've met who have MS, wanted to be as self-sufficient as

possible. Interestingly, no one I've met had any familial history of it.

Nor, do I.

I wouldn't be surprised if her attitude had a lot to do with her ultimate

outcome. But, sometimes it doesn't matter if you fight, or how hard you

fight, things will go sour anyway. But, it seems to me, often the harder

one fights, the better chance one has to live a better and longer life -

especially with some diseases. We all know that the mind is very powerful

- to be totally honest, I think if I would have just given up, I'd be in

a nursing home now.

Something else that just occurred to me - I really can't stand the type

of person who always wants to be taken care of, even when they're able.

It's one thing when you really can't take care of yourself. It's another

when you just don't even try. So, when I do happen to meet that type of

person in a group, I tend to shy away from them. So, it's possible that

there has been that type of person in MS related activities and I just

basically ignored them, and they didn't even register.

Something else - it's commonly known that stress - a lot of stress can

bring on an exacerbation of MS, and can cause a whole host of other

physical problems. Since people are so different, and clearly react to

things differently (small example - like when someone gets stuck in a

traffic jam...some people get really upset, others just take it as a part

of life), I wondered about people who have extreme reactions to

relatively small stresses versus people who, overall, deal with stress

pretty well. I've wondered if there is a correlation between how easy one

gets stressed out and getting some disease or symptom which may be stress

related. A lot of the people who I've known who have had chronic

conditions, seem, for the most part, to have learned to not get upset

over the small stuff. Or, to focus on their disease (not focus). Most of

the people I've known with MS and Lupus and a couple of other autoimmune

diseases, haven't focused on the fact that they have this disease -

rather, have focused on how to live DESPITE the disease.

Nothing scientific to what I've been saying - just my

observations......

Lynn

 

Just thought

I would make a comment on the MS thing as it is a concern in my family as

my step-sons' mother had MS and died from its complications.

 

She was definitely not a go getter; never was in her

life. In fact she was the type that wanted to be taken care of for

everything. Once she was diagnosed with MS she wanted the boys and

her ex-sister-in-laws to take care of her and her home.

 

I was told that this attitude was probably why she

went down hill so fast and ended up in a nursing home.

 

BUT it doesn't explain her getting the disease in the

first place as she was definitely not a go-getter!

 

Jackie

 

 

-

Lynn Ward

To:

 

Wednesday, March 26, 2008 10:42 PM

Re: Fwd: [prakruti] The Autoimmune

Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson

Nakazawa, Touchstone/Simon & Schuster

At 01:45 PM 3/26/2008, you wrote:

Very interesting article - long, but interesting, and pretty

inclusive.....I thought it was a very good description of a number of

factors people with autoimmune diseases deal with. There's one other

thing I've noticed, particularly with people (mostly women) who have MS.

Just about every single women I've ever met who had MS, was a go-getter.

The type of woman who would have made it to CEO. Active, and most had

full lives. Many were by nature very competitive. I don't know why this

is, but with a few exceptions, this has struck me every time I meet a

group of people who have MS. It's really odd to have a man in the group

who has MS. Of course, there are men, but the percentage is very small.

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At 09:09 AM 3/27/2008, you wrote:

Jane,

I couldn't disagree with you more. For example, I don't drink

sodas, and never have. I don't like carbonated drinks. Weren't allowed to

have them as a child, and don't like them as an adult. Never touched

things that were artificially sweetened. Have never been one to eat junk

foods. Simply don't like them and never have. Many people I've met who

have MS, lived very healthy lives. Exercised, were very active, ate the

right things and so on. Many, if not most, of the people I've met who

have MS had good jobs, or were in university when it struck. Although I

had been diagnosed with it for a while (when I was going to university

full-time and also working), I had the worst exacerbation I've ever had

when I was a stay-at-home mom with a crazy, abusive husband and 7 adopted

special needs kids. There was never any rest or respite from some very

difficult situations....

If you think that the type of person who wants to be taken care of is

more prone to get a disease like MS, then, one would have to extrapolate

that there is a hysterical quality about the disease. That if, they would

only take care of themselves - or want to take care of themselves, they

wouldn't get a disease which forces you to often be taken care

of...........People who want to be taken care of don't need to get an

incurable disease - they are usually able to manipulate people around

them to take care of them. Or, are able to easily fabricate something.

Heache, stomach-ache, nerves - whatever...........

I'm sure you didn't really mean to say what it appears you're saying....I

hope not anyway.

Lynn.

 

Jacquie was she someone who was always

taking diet drinks and food with the likelihood of sweeteners being part

of her everyday diet? I didn't read the article you refer to but I

feel that the type of personality which wants to be looked after is more

likely to develop MS & similar diseases especially if they don't get

as much " looking after " as they feel they deserve.

 

Best,

 

Jane

 

 

-

Jackie Davis

 

To:

 

Thursday, March 27, 2008 10:58 PM

Re: Fwd: [prakruti] The Autoimmune

Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson

Nakazawa, Touchstone/Simon & Schuster

 

 

Just thought I would make a comment on the MS thing as

it is a concern in my family as my step-sons' mother had MS and died from

its complications.

 

 

 

She was definitely not a go getter; never was in her

life. In fact she was the type that wanted to be taken care of for

everything. Once she was diagnosed with MS she wanted the boys and

her ex-sister-in-laws to take care of her and her home.

 

 

 

I was told that this attitude was probably why she went

down hill so fast and ended up in a nursing home.

 

 

 

BUT it doesn't explain her getting the disease in the

first place as she was definitely not a go-getter!

 

 

 

Jackie

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Jane,

 

I honestly can't remember her dieting much but that may be something I just wasn't aware of. Mostly depressed a lot prior to her diagnosis. She had been told to get off welfare and get a job. She was diagnosed a few years later.

 

Lynn had mentioned that everyone she knew with MS were go-getters and I wanted to mention that I know personally of the other side of the coin.

 

I am currently reading the book Living Well by Montel Williams. It seems to have some good insight into dealing with ovrerall health issues.

 

Jackie

 

Message -----

 

Jane MacRoss

Thursday, March 27, 2008 9:09 AM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

 

Jacquie was she someone who was always taking diet drinks and food with the likelihood of sweeteners being part of her everyday diet? I didn't read the article you refer to but I feel that the type of personality which wants to be looked after is more likely to develop MS & similar diseases especially if they don't get as much "looking after" as they feel they deserve.

 

Best,

 

Jane

 

-

Jackie Davis

Thursday, March 27, 2008 10:58 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

 

Just thought I would make a comment on the MS thing as it is a concern in my family as my step-sons' mother had MS and died from its complications.

 

She was definitely not a go getter; never was in her life. In fact she was the type that wanted to be taken care of for everything. Once she was diagnosed with MS she wanted the boys and her ex-sister-in-laws to take care of her and her home.

 

I was told that this attitude was probably why she went down hill so fast and ended up in a nursing home.

 

BUT it doesn't explain her getting the disease in the first place as she was definitely not a go-getter!

 

Jackie

 

-

Lynn Ward

Wednesday, March 26, 2008 10:42 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

At 01:45 PM 3/26/2008, you wrote:Very interesting article - long, but interesting, and pretty inclusive.....I thought it was a very good description of a number of factors people with autoimmune diseases deal with. There's one other thing I've noticed, particularly with people (mostly women) who have MS. Just about every single women I've ever met who had MS, was a go-getter. The type of woman who would have made it to CEO. Active, and most had full lives. Many were by nature very competitive. I don't know why this is, but with a few exceptions, this has struck me every time I meet a group of people who have MS. It's really odd to have a man in the group who has MS. Of course, there are men, but the percentage is very small.

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Lynn,

 

I believe you are correct in your observation that her attitude caused the rapid progression of the disease. Even the doctors agree.

 

At the time I read up on it and tried explaining to the boys that a positive attitude was necessary to help keep the disease in remission but a positive attitude is not something that an individual has who wants to be taken care of.

 

I agree that stress has a lot to do with how sick we get and how fast a disease progresses. I have numerous problems but I would rather get up and do something than lay in bed and if I have to lay in bed, I read, get on-line and research, plan homeschooling lessons, pick recipes, etc. Anything to keep busy and not veg in front of the television.

 

Jackie

 

-

Lynn Ward

Thursday, March 27, 2008 12:44 PM

Re: Fwd: [prakruti] The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance By Donna Jackson Nakazawa, Touchstone/Simon & Schuster

At 07:58 AM 3/27/2008, you wrote:Interesting....I don't actually think a certain personality type is more prone to getting MS - even though it's kind of seemed to me to be that way. There isn't enough information yet to make such a determination. I've just found it interesting, that most of the people, mostly women , who I've met that had the disease, had certain personality traits in common. The women I met were all through a group or aqua exercise. While certainly not inclusive of all who get MS, over the last 20 years, I've probably met several hundred women and a handful of men with MS in varying stages.. Most were what I described - the go-getter type. However, it could certainly be that the go-getter type is the type who would go to self-help groups and exercise.....I'm guessing that someone who wants to be taken care of wouldn't participate in those types of groups. Why should they? If all they want is to be taken care of and not learn ways of doing that yourself......Most of the people, both men and women, that I've met who have MS, wanted to be as self-sufficient as possible. Interestingly, no one I've met had any familial history of it. Nor, do I.I wouldn't be surprised if her attitude had a lot to do with her ultimate outcome. But, sometimes it doesn't matter if you fight, or how hard you fight, things will go sour anyway. But, it seems to me, often the harder one fights, the better chance one has to live a better and longer life - especially with some diseases. We all know that the mind is very powerful - to be totally honest, I think if I would have just given up, I'd be in a nursing home now. Something else that just occurred to me - I really can't stand the type of person who always wants to be taken care of, even when they're able. It's one thing when you really can't take care of yourself. It's another when you just don't even try. So, when I do happen to meet that type of person in a group, I tend to shy away from them. So, it's possible that there has been that type of person in MS related activities and I just basically ignored them, and they didn't even register.Something else - it's commonly known that stress - a lot of stress can bring on an exacerbation of MS, and can cause a whole host of other physical problems. Since people are so different, and clearly react to things differently (small example - like when someone gets stuck in a traffic jam...some people get really upset, others just take it as a part of life), I wondered about people who have extreme reactions to relatively small stresses versus people who, overall, deal with stress pretty well. I've wondered if there is a correlation between how easy one gets stressed out and getting some disease or symptom which may be stress related. A lot of the people who I've known who have had chronic conditions, seem, for the most part, to have learned to not get upset over the small stuff. Or, to focus on their disease (not focus). Most of the people I've known with MS and Lupus and a couple of other autoimmune diseases, haven't focused on the fact that they have this disease - rather, have focused on how to live DESPITE the disease. Nothing scientific to what I've been saying - just my observations......Lynn

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