Friday, September 16, 2005

Quilt shows victims of hepatitis C's silent onslaught

By Betty DeRamus / The Detroit News

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Daredevil motorcyclist Evel Knievel fought it. Actress Pamela Anderson told the world she has it.

So do some 4 million other Americans, including Pam Sienkiewicz of Milford.

No, I'm not talking about the high-profile disease known as AIDS. Hepatitis C, the liver-damaging virus that Sienkiewicz, 58, caught during a Caesarean section blood transfusion in 1979, is a more low-key killer.

Still, between 8,000 and 10,000 Americans die from it annually, compared with the nearly 16,000 Americans who died from AIDS in 2002.

Sometimes, hepatitis C sickens its victims quickly, and sometimes it slumbers for decades before striking.

Sienkiewicz wasn't diagnosed until 2001, when she began sweating and throwing up violently and requested blood tests.

Nowadays, the blood-borne virus is mostly spread by intravenous drug users sharing needles, through homemade tattoos and piercings, shared razors and possibly sex, though no one is sure how often that happens.

Yet there are people living with this virus who claim they've never used drugs and didn't get transfusions in the days before a test had been perfected to screen blood donors for the virus.

This is why the quilts matter.

At noon tomorrow, four rug-size hepatitis C awareness quilts will go on display in Farmington Hill's Heritage Park on Farmington Road.

They'll remain there for several hours. They'll be displayed again on Sunday, Sept. 25, starting at 9 a.m. at Belleville's Lower Huron Metro Park.

If you happen to see them, take a good look at the faces, names and dates of diagnosis on the patches. Some patches came from people living with hepatitis C. Others came from the relatives of those who died with it.

The patches were sewn together by Marie Stern, a California woman who believes she contracted the virus in 1978 and auto-immune hepatitis several years later.

"It can be hidden for decades," she says of the disease. "You wouldn't even know it. I thought I had the flu for four months, went to a doctor and he said, 'Oh, by the way, you have chronic hepatitis C.'

"Of course, my world shattered. At that time, they hardly knew anything about it and you were given a death sentence of a year and a half -- or that's how you felt.

"You can have it for decades and not know it and pass it on to people without realizing it."

Stern, 56, says she's never used drugs or had a transfusion or tattoos. She believes she might have been infected during dental work performed decades ago, or even from a manicure.

She and Sienkiewicz want people to get tested for hepatitis C even if they're feeling well or have only vague symptoms such as extreme fatigue, nausea, liver pain or depression.

They also want as many people as possible to see the hepatitis C quilts and ponder messages of faith and courage from people who fought back.

Betty DeRamus' column runs Monday, Wednesday and Friday in Metro. Reach her at (313) 222-2296 or bderamus@ detnews.com.