GINNY CLARK August 06 2007
Helen Croly is battling to change the way other people view hepatitis C.
I was thinking about coming off drugs when they told me that I had hepatitis C. So I thought, what's the point? If the drugs don't kill me, this will."
Six years ago Helen Croly, then an injecting drug user, was lying in a hospital bed awaiting treatment for an abscess on her leg when she was told the result of a routine blood test. As many people still believe, she thought it was a death sentence. She was wrong.
Around 22,000 people in Scotland have been diagnosed with hepatitis C, and 55,000 more are estimated to have the virus but have never been tested and simply don't know. Now, with the Scottish Executive's initial two-year action plan on hepatitis C underway, the twin focus is on improving local community-based treatment, care and support services for those who have been diagnosed, and on trying to raise awareness and encourage more people to come forward for testing.
One of the problems is that there are so many myths surrounding hepatitis C, including a certain stigma, with many people believing, incorrectly, that it is a drug-users' problem only.
advertisement"There is still so much misunderstanding about how it can be caught and how it affects people," says Louise Chisholm, manager of C-Level, the Glasgow-based charity working with people at risk of, infected by or affected by hepatitis C, in addition to the professionals operating with these groups. "Hepatitis C can be very serious and may lead to liver failure, yet most people with it can still lead long and healthy lives."
One-fifth of the people who catch the virus will also become clear of it without any treatment, while at least half the others can be cured with the combined approach of weekly injections of interferon and twice-daily doses of Ribavirin tablets. This happens over varying periods from three months to a year, depending on which type of hepatitis C has been diagnosed. Overall, however, eating properly, avoiding alcohol and staying active are vital to keeping healthy.
Helen's problems began with the premature death of her partner in 1996. The loss of the father to her two young children, aged four and seven months at the time, understandably hit her hard.
"I felt I couldn't cope," she says. "I felt I was left on my own." She fell into drug use, her children were taken into foster care, and by the time she was given the hepatitis C diagnosis, she was at rock bottom. With support and advice, however, she not only came off drugs but began the process of changing her lifestyle to improve her general wellbeing.
Helen Croly is battling to change the way other people view hepatitis C.
"I had to stay positive for my children - and I got there eventually, as I've been clean for five years," she says. "The virus had started to affect my spleen and my gall bladder, and I had no energy and constantly felt run-down. But once I started getting my appetite back and eating properly, things began to improve.
"Although I have type one of the virus, I'm not undergoing the treatment. I attend hospital regularly for liver function tests and right now everything is fine."
The great news for Helen - now 20 weeks pregnant and, together with her two other children, excitedly looking forward to this addition to the family - is that everything is progressing well. "I have to take iron, as mine is a bit low, and I inject heparin daily to prevent blood clots, but I've had the detailed scan and everything is great," she explains. "There is a five per cent risk of transferring the virus during the birthing process, but otherwise it's all about looking after myself properly. "I used to be so ignorant about the virus, but now that I know more about it, I can look forward to the future."
Helen's experience has proved valuable in helping others to come to terms with the diagnosis, and she works with C-Level as a volunteer peer educator at residential and community rehabilitation units, at GP methadone clinics and with community addiction teams.
Alex McGuire, another former addict, is now a board member on C-Level. However, since beating drugs five years ago, he's gone on to achieve a degree in arts and social sciences. He graduated last year, two years after his hepatitis C diagnosis.
"I got it through years of drug and alcohol abuse," he says. "I started on alcohol very early and turned to intravenous drug use in 1982, when I was 23. At that time there were no needle exchanges. We used the same needles, cleaned to our best ability, but passed about. I'm very fortunate that hepatitis C is all I got."
After 20 years, and going into rehabilitation, Alex was eventually clean. "Drugs had beaten me into the ground and I'd had every door shut in my face," he says. "But rehab gave structure to my life. Getting off drugs is relatively easy. Staying off them is the challenge.
"While I was at university I was doing some community work and a mate found out that he had the virus, so I thought I'd get tested too. I'd had a test about four years before, but I never got the results. It was just denial - thinking no news is good news. So when I found out after this test that I had hepatitis C, I was completely shattered.
"I was advised to go to C-level and I found out what a fantastic service they provide, including talking to people before they undergo the test, helping to explain away some of their fears. Previously, the only information I had was from other people at Narcotics Anonymous, but C-level blew away all the myths."
With type three, Alex was put on a six-month course of treatment. "The treatment can affect people in different ways, and it hit me hard after about three months," he says. "It was affecting my behaviour and I was snapping at people. After some discussion, I stopped taking it. When my blood was tested again, the virus was non-detectable.
"I don't really feel like I've got it. As long as I'm living well, that's fine. If I was taking drugs or alcohol or not eating properly, it would kick in and inflame my liver."
Now Alex is continuing to help C-Level, doing voluntary work, learning sign language - and helping to bust those myths.
"It's put down as a drug addict's disease, but anybody can catch it. I heard of a woman who got it from wearing her daughter's earrings."
For one 50-year-old mother and grandmother, who prefers to remain anonymous, it was a series of transfusions given to her after childbirth, from 1977 to 1981, that gave her hepatitis C. It was in 1992, when she herself was donating blood, that the virus was diagnosed.
"I didn't feel unwell; I felt perfectly normal," she says. "It was a terrible shock. In the middle of 1993 I had the first lot of treatment, and the interferon injections were at the test stage at that time. It didn't work. My liver is tested every six months and it was a case of waiting for new treatments. Just now I'm halfway through a year's treatment of interferon and ribavirin. I've had some mild depression and fatigue but it's actually OK. Even if it doesn't work completely, it will hold the virus back - give my body a rest.
"Considering the length of time I've had it, I don't feel ill. I'm slowing down a bit, and maybe a bit more forgetful, but that could just be getting older.
"I did feel angry when I was diagnosed, and I also felt guilty and worried about my children. But they all know about it and they haven't been affected.
"I did receive a compensation payment of £20,000. I was lucky in that I had written proof of my transfusions. Some people who were infected that way don't have the paperwork as not all records were kept.
"But I do feel the strain of keeping it all inside. The stigma isn't so bad now, but a lot of people still don't understand."
The biggest worry for her, however, concerns the background to her diagnosis. "I had been giving blood twice a year for six months before they found out. Who might I have given it to?"
The Facts About Hepatitis C
Hepatitis C is a blood-borne virus, passed by blood-to-bloodstream contact. Sharing needles or other paraphernalia for drug use currently represents the highest risk.
However, this doesn't mean only injecting drug users get hepatitis C. Anyone can catch the virus from another infected person by sharing toothbrushes or razors, through unsterilised tattooing or piercing equipment, unsterile medical equipment (perhaps in an underdeveloped country) or from blood transfusions in the UK before 1991.
Sexual transmission can happen - but, again, only via blood-to-blood contact. This risk is increased by having any other sexually transmitted disease (STD), anal sex or multiple partners. Transmission between monogamous hetero-sexual partners is rare.
There are six different types of hepatitis C - genotypes. Genotypes one, two and three are most common in the UK. Any genotype can cause liver disease, but although genotype one takes longer to treat than two and three (one year as opposed to six months) and also has a lower success rate for treatment, it will not make the patient more ill than the other types.
For every 100 people who catch hepatitis C, 20 will clear the virus within six months of being exposed, 60 will remain chronically infected but may not develop any serious symptoms, and 20 will begin to develop serious liver disease within 20 years.
Reproduced with the permission of The Herald, Glasgow © 2007 Herald & Times Group
