Trying to expose a hidden disease

~ Free screenings for hepatitis C will be held in Cape Girardeau May 10.

Julia Spears was a blackjack dealer in Las Vegas 30 years ago when she met and fell in love with Dan "B." Spears, a sideman in Willie Nelson's band.

But this isn't a country love song: Spears just wishes she knew she had hepatitis C back then.

When Spears met her future husband in 1976, Spears had already been infected with the potentially fatal blood-borne virus for eight years. She didn't know it then, and she didn't know it when she got married to B a short while later.

In fact, Spears -- now 55 and living in Tennessee -- lived with hepatitis C without knowing it for more than three decades before she was diagnosed in 2001. With proper treatment, Spears is now free of hepatitis C and is living a normal life.

Today, Spears wishes others would get checked, especially those who are at risk. That's why she formed a foundation to encourage people to get screened.

Spears and several others diagnosed with hepatitis C were in Cape Girardeau recently to encourage testing and to promote a free screening that is being offered here next month.

The Spears Foundation and OptionCare of Cape Girardeau have teamed up to offer the free screenings from 7 a.m. to 6 p.m. May 10 at OptionCare's offices at 61 Doctors' Park. Anyone over the age of 18 is invited to get a free screening, which involves a simple blood test, according to Joy Doll of OptionCare, a home health-care provider.

This program is the first in Missouri to be opened to anyone wanting to be tested, Doll said. Cape Girardeau physicians Dr. Theodore Grieshop and Dr. Ed Lavalle are the medical directors for the program. The screening is also confidential. People will find out the results by a letter. If someone tests positive, they will also receive a phone call, Doll said.

"Hepatitis C can be a serious, life-threatening disease," Doll said. "It's poorly understood and definitely underdiagnosed. ... People need to get checked."

Hepatitis C is a blood-borne virus that affects more than 4 million Americans, most of whom have no symptoms. Though spread by blood-to-blood exposure, it was not until 1992 that blood transfusions were screened for the virus. Any tattoos, IV or nasal drug use, or exposure to contaminated blood would put someone at risk for this virus that attacks the liver.

Hepatitis C is the major cause of those on the liver transplant list, most of whom had no idea they had the virus until it was too late to treat.

Lavalle said the virus can lead to liver damage or cancer. By the time symptoms show up, it's often too late, he said.

But if hepatitis C is detected early enough, treatments can control the virus and eventually eradicate it, he said.

When the virus is gone, it's called "sustained viral response," Lavalle said.

"It's similar to a cure," he said. "They don't call it a cure. But it goes away and never comes back."

Before detection, Spears herself often suffered with mild symptoms, such as chronic fatigue, joint and muscle aches and frequent bouts of what she thought was the flu.

Spears never thought to get tested, even when information became readily available, even though she knew she had flirted with intravenous drug use in the 1960s.

Then her symptoms became more severe. Later, a friend Spears had shared a needle with years before said she had been diagnosed with hepatitis C.

Finally, Spears was checked.

And diagnosed. She had hepatitis C.

"I just wish I had gotten checked sooner," Spears said.

Spears worries, however, that people believe it is a disease that mainly affects drug users. It isn't. And Spears brought many examples with her last month to tape a public service spot at KFVS12.

One was Nancy Marsh, a 64-year-old retired middle-school teacher from St. Louis. Marsh never used drugs. She was diagnosed in 1991 after donating blood for a friend who had leukemia. Marsh believes she got hepatitis C when she received four units of blood during a surgery for a ruptured cyst on her ovary.

Eventually, she was put on several drugs, including Interferon, which helps regulate the body's immune system, and Ribavirin, which attacks the virus. Even though the medicine had uncomfortable side effects -- aches, weight loss, severe chills -- before long, there were no detectable traces of the hepatitis C virus. She's been free of the virus for nearly 10 years.

Steve Fiedler, 53, of Bethalto, Ill., was diagnosed in the early 1990s. He believes he contracted hepatitis C while in the military when he got inoculations with an air gun.

"I was afraid to get tested at first," Fiedler said. "But people should. If you find out you don't have it, great. If you do, you have options."

Now, Spears wants others to learn from her mistakes.

"It feels so right," she said of her mission to educate others. "It feels like I stepped into my destiny. People don't have to live in fear. They need to know."

smoyers@semissourian.com

335-6611, extension 137