By Steve Bingham
05/28/02

According to the World Health Organization, there are 350 million people worldwide with chronic hepatitis B (HBV). But when it's you who are diagnosed with HBV, it can feel very lonely.
I remember the feeling when I was first diagnosed in 1981. I had never heard of HBV and didn't know if it meant that I was going to live or die. But now, 21 years later, I'm still going strong and get a great deal of satisfaction from helping others realize that there is life after a hepatitis B diagnosis.

Newly diagnosed patients usually come to our on-line support group in a panic. Not only are they worried about themselves and their families, but, in many countries, they have to worry about becoming societal outcasts. HBV has been the cause of engagements being called off, of marriages ending, and of pregnancies being terminated. I try to reassure our new hep friends that there are many reasons to be optimistic.

The first question that I ask is, "Are you sure you have HBV?" It's surprising how often patients are mis-diagnosed, or, sometimes, they just misunderstand their diagnosis. HBV is a complicated disease, and information and protocols about it are constantly changing.

If you, indeed, have HBV, then the next question is, "Is your HBV acute or chronic?" Chronic HBV is defined as HBV that lasts 6 months or longer. It is good news that 90% of those having adult-onset HBV clear the disease completely and never becomes chronic. The statistics for infants are unfortunately just the opposite-- 90% do become chronic.

If it's determined that you have chronic HBV, then you need to become pro-active. First, make sure that those close to you begin the 3-shot HBV vaccine series. Then, find a doctor that you feel comfortable with. Hepatologists have the most training in liver disease, but they can be hard to find. Most of us find a gastroenterologist, a doctor who specializes in digestive diseases.

Next, ask for copies of your lab reports and learn to read them. Then, get on the Internet and find out as much as you can about HBV. A good doctor will appreciate having an educated patient, and you'll find the more you learn, the less you'll worry.

Even though there are many promising treatments for chronic HBV in the pipeline, the ones that are presently approved are imperfect, only successful about 35% of the time. The success rate goes up if your HBV is active. Many adults with HBV are considered "inactive carriers" and don't qualify for the treatments presently available. These people can live an entire lifetime without experiencing any serious HBV complications. Others experience flares of activity, followed by periods of inactivity. So the next decision you have to make is whether to start treatment or to wait for something more promising to become available. Having a liver biopsy might help you with your decision. A liver biopsy is the only way to gauge how much liver damage the disease is doing, and it will give you another indication of how active the disease is.

If your HBV is inactive, it's ok to monitor it and wait. If it's not doing damage, there's no urgency. But most people don't like the concept of "living with HBV". They would naturally prefer to be virus-free. Thus, sometimes we find patients and doctors embarking on exhausting treatments that have little chance of success.

After you've educated yourself about HBV and have done everything you can do, you'll start to feel less anxious. Only 20% of those with chronic hepatitis B ever experience any severe consequences from the/ disease, such as severe cirrhosis or liver cancer. In my opinion, your outlook improves the more you know about the disease. The single best thing you learn to do for yourself is to give up all alcoholic beverages.

Finally, we all need to make sure that HBV doesn't take over our lives, that we don't become our disease. Balance is the key. Learn what you can about HBV, but then take time to enjoy life. This experience will help you to understand yourself and to appreciate things that you've previously taken for granted. Like me, you may find out that life after HBV is even better than before.