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Orphan Annie's Story

Hi There-

Well, where to begin?

I became infected with Hep C back in 1980 during a "tattoo party" at
my house. Everybody (7 of us) lined up to get a tattoo from a guy with a
handmade tattoo gun.

I was finally diagnosed in April 2001, after years and years of going
from doctor to doctor, asking them why I always felt so tired and dizzy.
Most of them said I was a hypochondriac (?) When I was finally diagnosed, in a funny way, I was happy. Happy to know I wasn't crazy! I got back in touch with the people at the party and found out that 6 out of
7 of us did have Hep C, we all had the same genotype (1A), but that 3 of us had already died from it.

Luckily, my biopsy showed only grade/stage 1. After about 8 months of
research and 3 different opinions, I began my journey with PEG-Intron
(Rebatron combo). Unfortunately, this lead to another of the worst decisions of my life (following the tattoo).

I wasn't having fun, but I was tolerating the treatment fairly well -
for about 4 months. Then, one morning I woke up andmy right hand was stuck in some weird cramp. My daughters (3 of them, ages13, 16, and 24 - thankfully all HCV negative) and I made a big joke about it,
saying "I have the CLAW". Well, within a few hours, it was no longer a joke! Within about 2-3 days, my entire body was painfully contorted with severe muscle contractions. My arms and legs (hands and feet) were swollen and red and throbbing, and I could not open my hands, lift my arms, bend my knees, or open my jaw! I ended up in the hospital twice. My SED rate (rate of inflammation, normally 0-20) was 140!

All the doctors agreed that this was a severe adverse reaction to the
interferon, but they also all agreed that they didn't have the slightest clue about what to do about it.

Well, it has been close to a year now. I have been in physical therapy 3x per week for the entire time. I can almost walk now. I still cannot lift my arms over my head. I can drive again now, but I really can't write. I can't hold my grandson. I had been a production typist/computer operator for
over 25 years - now this took me 3 days to write. I have had an EMG/nerve & muscle conduction test which shows damage to all my
muscles and nerves. I had a muscle biopsy which shows "neurogenic
rearrangement". They say this is permanent. I have been told that this is a very rare reaction, but I don't know. They said if they told people about this, it might scare off people that could truly benefit!!

I am now on a mission to make sure people are100% informed when they make the decision to go through therapy.
It is my hope that we can all live our lives with joy & purpose!

God bless you all!



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    Page last updated: July 7, 2003

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