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Brenda M: Primary Biliary Cirrhosis (PBC), Fibromyalgia, Pulmonary Fibrosis, and Sjogren's Syndrome

I carried on working, very frightened and very ignorant.

In 1965, when I was twenty-six, I went to work for a firm of electro-platers, which was mainly aircraft work. We were contractors for all the big aerospace companies such as British Aerospace, Fokker, Short Brothers, and Boeing. My job was to inspect the components for flaws both before and after plating. I stayed with the company for approximately two years.

Two years after leaving, I gave birth to my daughter. It was not an easy labor. First off, it was dry labor and after the birth I was anaesthetized as they were unable to retrieve the placenta. When I awoke, my baby had been bottle fed, as I had no milk.

A year or two later I had surgery on my legs for varicose veins. When my daughter was eight years old, I, once again, went back to work for that same company, which had expanded greatly.

It was two or three years later when I began to get dreadful abdominal pain. The doctor prescribed Tagamet which helped a lot, so for one year I would just ask for repeat prescriptions.

My doctor insisted I go to the hospital for tests. I was forty-two at that time. The consultant told me that I had had a peptic ulcer which had now scarred over and that my liver was damaged. They advised me to abstain from drinking alcohol (which I did), although I had only ever been a moderate drinker anyway.

During the next few years I was getting more and more fatigued and had another two surgeries for varicose veins.

At age fifty, I was really ill. I went back to the hospital and had more tests and a liver biopsy which was then diagnosed as primary biliary cirrhosis (PBC). The same consultant did have the grace to apologize for not having investigated further after the first diagnosis. I was led to believe it would be a few years to death or transplant and that I should send for him when I was ready for him.

I carried on working, very frightened and very ignorant. There was no one to discuss this with as my own doctors knew nothing at all about it.

My daughter, who by this time was at the university, depended on me as her sole support. I carried on working until I was fifty-four, after also being diagnosed with fibromyalgia and pulmonary fibrosis.

In 1997, I found a liver support group here in my own city. In the group were a number of people who also had PBC and one or two of them had had transplants. These people encouraged me to go back to the hospital.

Once again, I had another biopsy and still the diagnosis was PBC. By this time I was suffering with many infections, costochondritis, and Sjogren's Syndrome. I was practically living on antibiotics.

Two years ago I found out quite by accident that two of the solvents that I had worked with on a daily basis for many years—trichloroethane and trichloroethylene —were more than capable of causing all of these diseases. Now I am sure that I was being systematically poisoned, but trying to prove it is almost impossible.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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