Living With Hepatitis C: A Survivor's Guide
By Gregory T.Everson, MD, FACP, and Hedy Weinberg
Hatherleigh Press
274 pp $15.95

When you become seriously ill, it's as if you've suddenly landed in another country, where the language is unfamiliar and you don't know your way. For hepatitis C patients, there may be no better map through this new landscape than Living with Hepatitis C: A Survivor's Guide, by Dr. Gregory T. Everson and Hedy Weinberg.

Ever since the hepatitis C virus was first identified in the 1980s, it has rapidly achieved official status as an epidemic. The virus has infected about 4 million Americans, according to the Centers for Disease Control and Prevention, more than triple the number of people now infected with the AIDS virus.

Given this explosion, it is astonishing how little most of us know about hepatitis C. Because so many people know little about the virus and how it spreads, hepatitis C patients are sometimes ostracized by coworkers and alienated by spouses fearful of contracting the illness.

"When you're diagnosed with hepatitis C, all of a sudden you feel as alone as you can possibly feel, " write the authors of Living With Hepatitis C: A Survivor's Guide. "It's as if an invisible fence has gone up between you and all the other people who don't have hepatitis C. You have an infectious illness; they don't. You're worried about yourself, and you're worried about the people you love. You're angry. Perhaps you even feel ashamed ..."

Fortunately, Everson and Weinberg can help. First published in 1998 with a fourth edition published in 2006, Living With Hepatitis C is one of the most clear, informative, authoritative, and comforting books for families grappling with this illness.

The authors make a great team. Everson is a hepatologist and a hepatitis C expert; Weinberg is a writer who was diagnosed with the disease in 1992. Together Everson and Weinberg ably tackle the misconceptions about the disease in clear, highly accessible prose. From the start the authors recognize these feelings of panic and isolation that inevitably accompany such a diagnosis. But they also provide patients with tools that can play an essential role in their treatment and help them stay healthy.

Many of the patients Everson and Weinberg interviewed knew nothing about the virus before their diagnosis. People tend to confuse hepatitis C with its sister virus, hepatitis B, which has different symptoms and outcomes. To add to the confusion, researchers have now identified an alphabet soup of other viruses: hepatitis A, D, E, F, and T.

The authors have peppered the book with Weinberg's reflections as well as those from other hepatitis C patients. These quotes are -- thankfully -- not inspirational homilies about how illness can make you a better person, but realistic snapshots of life with a chronic disease.

Several people discuss the challenges of dating after contracting hepatitis C. "I'm single, and I'm not the smoothest, slickest character around," reflects a man named Russ. "It's always been hard for me to meet women. Now I have to tell them I have hepatitis C. When should I tell them? Will they want to have anything to do with me?"

"I can't believe this guy at work, " another woman tells us. "I left a can of pop on the table for a minute and he drank it by mistake. He freaked out when he found out it was mine. Now he won't even talk to me if he can help it. When he passes my desk, he won't even look me in the eye."

Everson and Weinberg also provide readers a fine overview of hepatitis C: its history and makeup, and how it is contracted, diagnosed, and treated. There is a fascinating chapter on the liver and its role in the human body. It turns out that this football-sized organ is a miraculous machine that oversees 500 vital functions in the human body. "Imagine a machine that converts food into energy; stores nutrients, fats, and vitamins; makes proteins for blood plasma; and detoxifies poisons," the authors write. "Your liver does all this and more -- much more." Since the liver is so essential, of course, it explains why hepatitis C is potentially so damaging: The virus threatens the liver, and when that organ is compromised, there's trouble.

Chapters on how people with hepatitis C can enjoy emotional, nutritional, and even financial health offer readers practical advice about everything from dealing with depression to managing treatment costs. The authors also provide a history of hepatitis C treatment, as well as up-to-date information about medications that, as part of a drug cocktail, are quickly becoming the standard of care for the disease. Side effects of the drugs can be intense, so the chapter includes helpful tips for easing unpleasant side effects.

The authors go on to discuss the possible long-term impacts of hepatitis C infection -- including liver transplantation and liver cancer -- with caution and sensitivity. Patients will find here everything they need to know about having a liver transplant, from how long the hospital stay will be to where to find a transplant support group.

Parents of children with hepatitis C face particular challenges. Not only do many parents feel tremendous guilt for their role in the child's infection; they also must decide how much to tell teachers and friends about the child's condition. Then there is the question of treatment, which can be painful, and can have brutal side effects.

But today, many parents are facing these issues: According to the American Liver Foundation, one in every 500 children in the United States between 6 and 11 has chronic hepatitis C infection. Living With Hepatitis C confronts these thorny issues and offers advice and bits of experience from psychologists, physicians, and parents themselves.

One mother remembers, "I put off my treatment so my daughter and I could do it together -- so I could be a support to her. I did her shot, and she did mine. It helped both of us. We'd lie in bed together and watch 'Animal Planet.' I'd notice that she would look pale and tired around her eyes. 'Darn this hep C thing,' she'd say. 'I know,' I'd answer. 'But we're doing the right thing.' "

Everson and Weinberg's effort is exhaustive: there seems to be no stone they've left unturned. The book ends with chapters on hepatitis C research, and a resource section that includes contacts and a lengthy bibliography.

Miguel de Cervantes, the creator of Don Quixote, once said, "The beginning of health is to know the disease." For those with hepatitis C, this book is an excellent place to start.

-- Connie Matthiessen is a San Francisco-based writer and editor. She has served a staff writer for the Center for Investigative Reporting and has worked on health stories for the public television series Frontline.

First published October 30, 2003
Last updated December 5, 2007
Copyright © 2003 Consumer Health Interactive

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