Posted: 9-Oct-2006 << BACK
There is life after hepatitis C - Western Mail - Oct 9 2006 - I-C-Wales
It has been just 15 years since a test for hepatitis C was developed, but for most of us it remains an unknown disease. Health Editor Madeleine Brindley heard former sufferer Jane's story
Jane, 42, has two children and is a drugs worker in Swansea. She had hepatitis C for almost 20 years but successfully had treatment to kill the virus last year.
"I was an injecting heroin user for 20 years. It was while I was working as a nurse that I started using diamorphine. The people around me were using, I was homesick and just started using - all the things I said that I would never do, I did, including injecting.
"I always thought that I had done it safely, I was a nurse after all and I had access to clean needles. But I shared them with my partner because I thought he was OK because he had never shared a needle with anyone and we lived together.
"In 1985 I reached my first rock bottom - I lost my job and had an acute onset of what I now know was hepatitis C. I was quite ill and jaundiced and although I was tested for hepatitis, I was told that it was non-A or B and to go away and live my life, which is what I did.
"I had two children - born in 1989 and 1991 - but it wasn't until my youngest son was two that I decided I wanted to do something about my drug problem. I would hold down a job then lose it because I couldn't keep it, I was on a methadone programme and bringing up my children. I would take them to school every day and do the day-to-day things other people do, the only difference was that I couldn't give up the drugs.
"I had support from the Swansea drugs project but it was a very secret life. When I saw my GP about giving up the drugs - I was living in England at the time - I was asked whether I'd been tested for hepatitis or HIV and I said that I had been in the past. I was tested again and told I had hepatitis C. I was shocked, I was horrified, but most of all I was terrified for my children - my first thought was that my children were going to die. I had them tested one at a time - I couldn't bear to have them tested together - and, fortunately, they were clear.
"I knew very little about transmission, about how I caught it and how I could pass it on. I didn't know if I was going to have a normal life or if I would be there to watch my children grow up. There was a lot of stigma around at that time - almost like the stigma about HIV. I was so afraid that other people would find out and my children would be injured. I was so paranoid that I was going to infect them. If I had a cut on my finger I would run away and disinfect it until it bled, then, instead of using a plaster, I'd put a large bandage on my hand. A few years later I decided to be honest with my health professionals and told my dentist that I had hepatitis C. He struck me, and my family, off his list.
"I stopped using drugs completely in 2001 - I went to detox for the final time and entered a 12-step abstinence programme. I haven't used since.
"For the first two years of my recovery I wasn't ready to start treatment for the hepatitis, because I knew the side-effects were pretty horrendous. I also knew someone who had started treatment soon after they came off drugs and they had a relapse. I didn't want to put myself at that risk. After three years, I decided it was time.
"The treatment involves you injecting yourself in the stomach once a week with the drug interferon - another reason why I waited. It gives you flu-like symptoms for 48 hours and you also have to take another drug twice a day, which lowers your blood count, making you anaemic and vulnerable to all types of infections. The treatment took six months and, towards the end, I lost some of my hair, but I had a support group to help me and I also had acupuncture and did yoga.
"Within two months of finishing the treatment I started to feel better - I hadn't realised how ill I was until I didn't have hepatitis C anymore. I feel as though I have been given a whole new life."The hepatitis C support group meets on the last Thursday of every month in Swansea. Contact Carol at the Swansea Drugs Project on 01792 472 002 for more details.
Not just liver at risk
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver causing inflammation and, sometimes, significant damage.
Although it has always been known as a liver disease, recent research has shown hepatitis C affects other body parts including the digestive, lymphatic and immune systems, and the brain.
Hepatitis C was discovered in the 1980s when it became apparent that there was a new virus (not hepatitis A or B) causing liver damage. It was known as non-A non-B hepatitis until it was properly identified in 1989. A screening process was developed in 1991 that made it possible to detect it in blood samples.
There are about 200m people worldwide with hepatitis C, but the level of infection varies widely from country to country.
Hepatitis C is an RNA virus - RNA viruses mutate much more than DNA viruses, making it harder for the body's immune system to locate and destroy them.
In hepatitis C there are six major variations of the virus, known as genotypes and labelled one to six.
Hepatitis C infection is in two stages, firstly an acute infection (after initial infection) and secondly a chronic infection. The acute stage refers to the first six months of infection - about 20% of those infected with hepatitis C will naturally clear the virus from their body and experience no long-term effects. However, for the remaining 80% a chronic infection will develop. Treatment to eradicate the virus has advanced in the past few years with success rates now around 50% for genotype one and 80% for genotypes two and three.
However, the treatment can have significant side effects and is not suitable for everyone. A vaccine remains a long way off.
[source: The Hepatitis C Trust]
