Vulvodynia - Major Media Victory ! Read Article in Canadian Newspaper - via NVA

[Guest guest]

Those of you who cope with vulvodynia and/or are members of the

National Vulvodynia Association of members of its support group on

yahoo: will be glad to hear this: We have scored recent Major Media

Success! In CANADA

The first one of two articles appears below.

PLEASE SCROLL DOWN THROUGH THE WHOLE ARTICLE TO LOCATE the SECTIONS

ON VULVODYNIA

THANK YOU NVA! from all of us! and CONGRATULATIONS!

Hugs.. Snofyre00@...

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PATIENT DELUSION - OR MEDICAL CONFUSION?

ZOE CORMIER

From Saturday's Globe and Mail

When Anet Greenley got sick four years ago, what upset her the most

wasn't the continual nosebleeds, the numbness in her limbs, or even

the fact that her stool had turned green. What really bothered her

was the fact that nobody would take her seriously.

" My doctors all told me I was stressed out, that it was all in my

head, that I was having panic attacks that upset my stomach, " says

the 38-year-old Ottawa native. " Even some of my family told me it was

in my head.' "

But Ms. Greenley knew she was genuinely sick -- so sick that she had

to quit the University of London and fly home from England. And

several months later, after going from doctor to doctor, she finally

found out she was right: She has multiple chemical sensitivity (MCS),

a condition that makes her extremely sensitive, you could say

allergic, to synthetic chemicals.

These days, Ms. Greenley can control her symptoms, as long as she

avoids everything she reacts to: cologne, dryer sheets and car

exhaust are just three irritants on a very long list. Other than

that, though, there's nothing much she can do. The syndrome is so new

that doctors still don't know what causes it -- or how to treat it.

And Ms. Greenley is not alone. According to a Statistics Canada study

released last week, more than one million Canadians are suffering

from illnesses that are stumping their doctors.

The most commonly reported conditions are MCS, chronic fatigue

syndrome and fibromyalgia (all of which affect twice as many women as

men). Reports of a host of other mysterious diseases -- such as

Morgellons and vulvodynia -- also seem to be increasing in both the

United States and Canada.

What these disparate illnesses have in common is patients' struggle

not only to find a cure for baffling symptoms, but to establish

legitimacy for their complaints. The causes of these conditions

remain controversial -- and many doctors continue to label symptoms

as delusional.

Some of the skepticism patients encounter is understandable --

especially when they claim to have something as bizarre as Morgellons

disease. People who suffer from this affliction say they are plagued

by constant itching, burning and crawling sensations, open sores that

won't heal, and strange " fibres " (black, white, blue and red)

erupting from their skin.

Although at least 4,000 people have now registered with the

Morgellons Research Foundation in the United States -- including

former Blue Jays pitcher Koch -- the vast majority of doctors

do not consider Morgellons disease to be anything more than a

textbook example of " delusions of parasitosis " or DOP, a psychiatric

condition.

This is what Stan Skoumal's dermatologist clearly thought was his

problem. After waiting seven weeks for an appointment, the 54-year-

old from says his symptoms were simply dismissed.

" The whole visit took 11 minutes, I received a seven-minute lecture

about the wonders of the mind, I was given a psychotropic medication,

and then I was out of there, " he says. " The man never came any closer

to me than about 10 feet. "

Frustrated, Mr. Skoumal launched a lobby and support group called the

Morgellons Society of Canada last fall. He avoids medical doctors and

treats himself with baths, diets and exercise. And he combs blogs and

chat rooms, where suffers have posted hundreds of amateur

microphotographs of their skin showing their " fibres " and the

parasites they believe have infected them.

Still, some medical professionals believe that such attempts -- while

addressing patients' helplessness and anger at the reaction of

conventional health practitioners -- may do more harm than good.

" Interpreting things under microscopes are fraught with danger --

you'll find what you're looking for, " Dr. Jay Keystone says. " Lie on

your back and look at the clouds. It's a good analogy. "

Dr. Keystone, who practises with the tropical medicine unit at

Toronto General Hospital, has studied parasitic diseases for more

than 30 years and has treated many patients with DOP, and a small

number of whom claim to have Morgellons. " From time to time, I do see

what they're looking at, I do see the occasional 'fibre,' " he says.

He adds that, in response to stress, the nervous system releases

chemicals that can cause some strange symptoms.

But he also says all the lab tests have shown absolutely no evidence

of parasites. He is certain that most patients have open sores

because they have itched and scratched themselves raw.

Not all doctors agree. Dr. Vitaly Citovsky, a professor of

biochemistry and cell biology at the State University of New York,

says he found a gene from agrobacterium -- a germ that normally

infects plants -- in skin samples from two Morgellons patients.

This is just an idea, though -- two samples do not constitute proof

that the condition is not psychosomatic. And it's a long way from an

idea to a treatment. All of which means patients may suffer for

years, even decades, waiting for answers.

Even when a mysterious syndrome has been concretely established, the

stigma of earlier psychosomatic diagnoses can remain, affecting

patient care.

For example, roughly 15 per cent of women experience vulvodynia --

debilitating, sometimes crippling, genital pain caused by muscular

and nervous dysfunction. Mainstream medicine has recently recognized

vulvodynia as a real disease, but doctors continue to tell women that

their condition is " all in their heads. "

" Doctors tend to go through their routines, and if their routines

don't give them an answer, then they say it's all in your head, " says

Dr. Kaye Kilburn, who studies MCS at the University of Southern

California. " It is shoddiness, and it is widespread. But it doesn't

mean the physicians who are in the minority aren't right. "

Laurie can attest to this. When the 53-year-old from Regina

starting having constant burning pain on her vulva, she was told that

she had emotional problems. " So I went to a psychiatrist, " she

says, " and even though I wasn't depressed at first, you start to

become depressed because you go from doctor to doctor and nobody can

tell you what's wrong. "

Living was luckier. When the 24-year-old's pain started two

years ago, just before she got married and moved to , she got

a diagnosis fairly quickly -- in seven months. Unfortunately, her

dermatologist did not tell her about any treatments.

On her own, Ms. Living discovered anesthetic creams and

chemical " nerve blocks " that could help her. Before then, she

says: " I was depressed, hopeless, I didn't think there was anything I

could do. "

None of these treatments have universal success, however. And,

although vulvodynia affects six million women in the U.S., there have

been only eight studies funded by the National Institutes of Health.

Indeed, researchers who study unexplained syndromes all complain of

the same thing -- that there is simply not enough money for research.

Funds tend to be earmarked for high-profile, fatal diseases such as

cancer and heart disease.

As for the million-plus Canadians who suffer from MCS and chronic

fatigue -- conditions that have been dubbed " yuppie flu " and " 20th

century syndrome " ?

Studies are emerging to explain the cellular and biochemical causes

of these strange disorders. For example, researchers affiliated with

the University of Toronto are looking into enzymes that they say are

slightly different in people with MCS, preventing them from

detoxifying foreign chemicals properly.

But effective treatments are still a long way off. Ms. Greenley, for

one, doesn't think she will ever be cured -- so she and her husband

have installed charcoal filters on the air vents in their new house

and purchased a $4,000 hypoallergenic mattress.

" When you have MCS, it is very easy for people to think you're a

paranoid person, " she says. " I'm not. I'm just trying to protect

myself and make it so I can have a normal life. "

Zoe Cormier writes on health and science from Toronto.

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