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Living with Hepatitis B: A Survivor's Guide

By: Gregory Everson, M.D., and Hedy Weinberg

"Living with Hepatitis B: A Survivor's Guide", by Gregory T. Everson, M.D., and Hedy Weinberg, is the first guidebook devoted entirely to hepatitis B. The length of the book, almost 300 pages, takes readers step-by-step through the process of diagnosis and ongoing care with detailed chapters on HBV infection, the liver, tests and liver biopsies, treatments (the longest chapter in the book), transplants, cancer, co-infection, children, research trends, plus 130 resources for patients. Chapters on emotional, financial, and nutritional issues address frequently asked questions.

The authors wrote this book with three hopes:

(1) that it focuses public attention and research dollars on HBV, not only with statistics, but also through the voices of people with hepatitis B.
(2) that it helps lessen the feelings of isolation, fear, and even shame, that patients and families endure.
(3) that it helps patients become more informed and thus better able to work with their physicians.

Her chapter titled "Taking Care of Yourself Emotionally " includes an insightful description of living with chronic hepatitis B

Six Common Problems

1. Feeling Low, Physically and Emotionally : Fatigue narrows your world as you find yourself less able to work or play. Grieving these losses allows you to move on.

2. Feeling Contaminated: You may feel dirty and ashamed. The public's ignorance about the ways in which people contract HBV adds to your burden. "I didn't keep anything back. No secrets. I told everyone I had hepatitis B. I was so na´ve. Once, my friends were gathering names to help make food for a funeral. I volunteered to bake a pie, and the woman in charge said, 'Maybe you could buy the pie.' I knew right away what she was implying. So I bought a pie."

3. How You Got Infected: No matter how you got HBV, you have issues to resolve - coming to peace with the behavior of others or forgiving yourself. "I've tried for years to find out how I got the virus. Could it have been from my mother who died of liver cancer? Did I get it from dental work or surgeries or in one of the hospitals where I worked?... I 've arrived at a place of peace in my life. I accept the fact that I 'll never know - and I no longer search for that answer. Now I focus on how the virus can be stopped from spreading."

4. Being Sick but Looking Good: Many people, including yourself, may not believe you are ill, and you may not get the support you need.

5. Up and Down Nature of Hepatitis B Treatment: Life becomes a roller coaster. "After three years on treatment, the virus started mutating. My DNA viral load went up drastically in three months. 'Hey', I said, 'I'm a mutant!'"

6. Lack of Information: "When I adopted my baby and then found out he had hepatitis B, I stayed up most of the night looking for information on the Internet. Our pediatrician didn't know much either. But the public health department called right away. A week later they sent me a letter wanting to know who my son's sexual partners were. He's five months old." 

"Living With Hepatitis B" is a book that truly reflects the hepatitis B experience. As Hedy observed, "living with hepatitis is an intense physical and spiritual struggle, but people should know that they are not alone." Now there is finally a book about "hepBers" to help bridge the information gap.

The collaboration between Dr. Everson and Hedy has produced three editions of "Living with Hepatitis C: A Survivors Guide "and "My Mom Has Hepatitis C", a children's book. Dr. Everson, Director of Hepatology at the University of Colorado Medical School, presents accurate, reliable medical information. As a person living with hepatitis C, Hedy addresses the concerns of people struggling with the challenges of chronic illness, and translates medical jargon into language that patients can understand.

 


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