Hepatitis C

A good friend of mine was diagnosed a little while ago with a Hepatitis C infection (HCV). The diagnosis came after years and years of symptoms that were ignored, dismissed, or misattributed to other problems. No one thought to test her because she was not in a "risk group". That is to say, she did not fit a stigmatized profile for a HCV patient. She was not a drug user, didn't have mutiple body piercings and tatoos, and did not have another blood transmitted infection (e.g., HIV). She did, however, have a transfusion before the blood supply was screened for the virus.

So who finally thought to have her tested for hepatitis? A dermatologist.

Since being diagnosed, she has been squeezed into the stereotype profile for a high risk HCV patient. What do I mean by that? I mean a moron doctor wrote in her history that my friend had a history of IV drug use (my friend has a needle-phobia), had multiple piercings (my friend has a couple of earrings), tatoos (none), and was a closet alcoholic (no). When my friend saw this in her chart, she was understandably irrate and upset. She asked that it be removed, but encountered resistance. As far as I know, the misinformation is still in her record. This is not only offensive and just plain wrong, it is bad for research. That issue is probably best saved for a mega rant at some later point.

She began treatment for the infection this summer (ribavirin/interferon combo). The side effects of these drugs are just awful, and she has had nearly all of the listed side effects already. She has become an expert in HCV and jokes that she is getting her medical degree on the side. She shows up to her doctors' offices with her big bulging folder with information and her list of questions and concerns. This puts off some of them of course, but it is what she must do to take care of herself. The good news is, it's working. She e-mailed me recently to tell me that her viral load was undetectable in her recent bloodwork. This means she "wins" 36 more weeks of what she calls "pretty nasty drugs".

I am elated that this drug regimen is doing something other than making her sicker. I know she considers the lowered viral load a mixed blessing as the first 12 weeks of therapy have been ungodly difficult. But she is committed to continuing it. I want her to win on this. I want her to be better because I want her to feel good finally after so many years. But I want her to win for for purely selfish reasons as well. There are a lot of people in this world who get me down, who grate on me, who blunder through their own and other people's lives on autopilot. My friend is not one of them. The world needs more peole like her. I need more people like her. And so I am happy to know that her strength and character has paid off, that her chances for recovery are up, and that she may someday soon kick this virus into remission.

I've decided that I'm going to do something amazing this week in her honor. She has inspired me.

About HCV

From Hep C Alert (the website's being updated so it's a little user unfriendly right now)

One or more of every fifty people in the United States is infected with the hepatitis C virus. Often called "The Silent Epidemic", the disease can linger without symptoms for decades while causing serious liver damage. Risk factors that indicate the need for prompt screening include:

* Blood transfusion or solid organ transplant before 1992.
* Treatments with blood clotting products before 1987.
* Long-term kidney dialysis.
* Shared drug needles; drug straws; body piercing needles; tattoo needles and inks.
* Accidental needlesticks; blood contact with the eyes, nose, mouth or broken skin.
* Unprotected sex with multiple partners.
* Elevated liver blood tests.
* Previous diagnosis of hepatitis B or HIV.
* Unexplained fatigue.
* History of any military service - particularly Vietnam veterans.

People who are concerned about their risk for hepatitis C should call Hep-C ALERT's toll-free hotline 1-877-HELP-4-HEP (1-877-435-7443) for a confidential health-risk assessment and referral for a blood test. Counselors are available Monday through Friday 9:00 am to 5:30pm and on Saturday 10:00am to 1:00pm EST.

Hep-C ALERT, a national nonprofit service organization formed in 1997 whose mission is to raise awareness of and assist people affected by the disease; offers hepatitis C education, counseling, screening and medical referral services for individuals, public health and employer groups. For more information, visit the organization's website at www.hep-c-alert.org.