Ann Jessie felt fine when she reported to her doctor's office for the results of a routine physical. A few minutes later the 58-year-old Denver woman emerged, shaken by the diagnosis that she had an incurable--and potentially fatal--disease.
That was a year ago. Now, Jessie is preparing to launch a support group through University Hospital for people like herself who carry the hepatitis C virus. It will be the only such support group in Colorado and one of few in the country.
Like many others with hepatitis C, Jessie had no idea she had been carrying the virus. She believes she was infected through blood transfusions received during surgery in 1977. But she experienced no symptoms such as fatigue or swelling.
Hepatitis C is a blood-borne virus most often transmitted through blood transfusions done before testing was implemented in 1989, as well as through intravenous drug use and accidental self-inoculations such as needle pricks in medical situations. Unlike AIDS, it is not thought to be easily transmitted through sexual contact, although that can occur.
But not everything is understood about hepatitis C transmission. Half of those people infected say they cannot identify a cause that led to their infection. Part of the reason is that it can take twenty years for a hepatitis C infection to become life-threatening.
The hepatitis C virus attacks the liver, the organ that cleanses toxins from the blood and regulates metabolism. More than half of the people infected will develop chronic cases in which the attacks are repeated over a period of years. Repeated attacks can lead to cirrhosis and liver failure; about half of those with chronic hepatitis will eventually reach a point of needing a liver transplant.
About 3.55 million Americans are believed to be infected, according to the Centers for Disease Control in Atlanta, Georgia. In Colorado, there are an estimated 20,000 to 40,000 people living with hepatitis C, says Dr. Gregory Everson, medical director of the liver program at University Hospital.
The CDC reports that there are about 150,000 new infections every year, although officials there say the numbers are grossly underreported. Everson says there have been about 1,700 new cases of chronic hepatitis reported annually in Colorado for the past few years.
University Hospital liver-transplant teams perform about sixty operations a year. Still, from ten to twenty patients on the waiting list will die before a donor organ is available. Everson oversees one of the few experimental hepatitis C treatment programs in the United States. So far, the drug interferon has had limited success in controlling the virus.
Unlike AIDS, where billions of dollars are spent every year on providing support services for those infected, virtually nothing is spent on support services for people with hepatitis C. There is also nothing much done in the way of public education about the disease except through programs such as the one at University Hospital.
Following an article in Westword about the "silent epidemic" of hepatitis C ("The Hep-C Generation," February 8), Jessie, who with the assistance of Everson and his staff had been looking into starting a support group, says she has received several telephone calls each day from people affected by the disease.
Like people with AIDS, those with hepatitis C have to deal with the social stigma associated with the disease. They, too, lose jobs, homes and families due to the misunderstood disease, says Jessie, and there has been nowhere to turn for counseling or information.
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For five months after her diagnosis, Jessie says, she tried just about everything outside of modern medicine to find a cure: acupuncture, herbs, exercise, specialized diets. But her liver enzymes remained at high levels, a sign that the virus was active and attacking the liver. So she turned to University Hospital and got on its interferon program.
"I've responded well," she says. "My enzymes are down." But she also wanted to help others deal with the disease.
The support group, which will have an office and message center at the hospital, will at first concentrate on providing information and referrals. It will also sponsor regular meetings for discussion groups.
Jessie plans workshops for such things as relieving stress and mind/body healing. Because of the group's association with the hospital, it will tend to shy away from "the kinky stuff," such as coffee enemas, in the realm of alternative healing practices, she says, adding with a laugh, "at least for now.