Sun 23 Sep 2007 as told to Ruth Walker - New Scotsman
In 2004, Petra Wright, 52, from Bo'ness, was diagnosed with hepatitis C, the same disease Anita Roddick revealed she was suffering from last February. The virus is still surrounded by stigma, despite the fact that it can be contracted during a blood transfusion, as happened to Roddick.
Just after I had moved to a new job at Standard Life, I started having terrible problems with concentration and aches and pains in my arms - I was generally not feeling myself. My liver function tests came back normal, but when we did the test for hepatitis C, it was positive.
The first thing I thought was: "Oh my God, I'm going to die tomorrow." There was so little information out there about it. I finally found the Hepatitis C Trust website and that woke me up to exactly what it was.
This will be the first time I've actually said this, but the trust has helped me come to terms with a lot of things - I know that my hepatitis was probably caused by stupid drug use in my early life. We're talking 30 years ago and, really, that person is not the person I am today.
I had a very stressful family time in 2000 and never seemed to recover properly. To me, it feels as if the stress possibly allowed the virus to replicate more and bring things to a head.
Letting the family know was hugely traumatic; telling my son was particularly difficult. And then I did it in ever-increasing circles. So I started with my son and my husband, then told my brothers and sisters, and finally my work colleagues, although I wasn't exactly straight with them about the situation until my retirement dinner.
I was very surprised by the reactions. Some people have dropped off my radar since then. But I think of it this way: did I really want anyone who stopped contacting me to be my friend anyway? However, a lot of my good friends offered support.
The last part of my coming out was doing a trek to Nepal for the trust last October. I realised I would have to make more people aware, and went to the local press, which was a bit frightening. But the community here just rallied round me. It was so nice to be buoyed by that support: people sounding their car horns at me in the street when I was doing my training, and a few actually came up to me and told me they also had hepatitis C, or somebody in their family did. It was very revealing.
Doing the actual trek was fantastic. I am so glad I did it and couldn't believe I managed to complete it. It was more difficult than I'd imagined, but that made it all the sweeter at the end.
I have depression and fatigue. I've got the arthritis that goes along with it as well. It's like a gradual breaking down of your quality of life. Sticking to a diary is difficult. The more important something is, the more likely I am to forget about it. Sometimes I'll remember the stupidest thing, but then at other times I'll struggle. I've got to the stage now where I look to my husband to finish my sentences for me.
Taking early retirement from work two years ago was a big thing because there was no way I was in a position to afford to do something like that. But I had to try to avoid stress at all costs - and marketing just wasn't the environment for that.
Drug treatment did clear the virus but unfortunately it came back when I stopped. Now there is no other treatment for me at the moment - I'm waiting for the scientists to come up with one. My consultant told me that, even though the treatment hadn't worked, the time I was on it had given my liver a rest, and whereas before he may have said I was going to progress to cirrhosis within five to ten years, now he would be happy to say ten to 15. So it bought me time.
I've got a lot of anger. I've had to change a lot of things. I don't drink alcohol, but I have even had to make simple changes, such as switching from ibuprofen to paracetamol. Wee things can make such a big difference.
I was in floods of tears when I heard Anita Roddick had died [from a brain haemorrhage]. It meant so much to me when she came out on TV. It felt as if the disease had moved into the realms of normality, and some of the stigma had gone away.
There is still so much to learn about the virus. And in the Forth Valley we have no support group whatsoever. I'm trying to get that under way because it's very important. One lady from Livingston, who had been diagnosed some years earlier, called me and said she'd never spoken to anybody else who had it. She'd been busy keeping it a secret and there was I, loud and proud. That meant a lot to me, that she wanted to phone and speak to me.
HEPATITIS C
Hepatitis C is a blood-borne virus that affects the liver gradually over 20-30 years and can lead to liver scarring (fibrosis), cirrhosis and, ultimately, liver cancer or liver failure and death.
It was discovered in the 1980s but only properly identified in 1989. A screening process was developed in 1991 that made it possible to detect it in blood samples.
Symptoms
Symptoms include fatigue, pain in the liver area, digestive problems, concentration difficulties ('brain fog') and flu-like symptoms such as headaches, shivering and aching joints. The presence or absence of symptoms is no indication of how much damage the virus is doing to the liver, which is why hepatitis C is also called 'the silent killer'.
How common is it?
Estimates vary but the Department of Health believes 0.4% of the UK population has chronic infection, equivalent to 240,000 people. In the UK only 50,000 have been diagnosed with chronic hepatitis C, meaning that up to eight out of ten have no idea they are infected.
How is it transmitted?
By blood-to-blood contact: via blood transfusions (before a test became available in 1991 to screen donated blood); by sharing equipment for injecting drugs or snorting cocaine; by medical or dental treatments in countries where sterilisation is inadequate; by sharing razors or toothbrushes that come into contact with broken skin (in both people); by tattooing or piercing, if done with unsterile equipment; or from mother to baby at birth. Hepatitis C is not transmitted through normal social contact, such as touching, hugging or kissing.
Treatment
The combination therapy of pegylated interferon-alpha and ribavirin is effective in clearing the virus in around 50% of people. Unfortunately, it is not suitable for everyone and can cause severe side-effects.
To find out more or to get support, call the Hepatitis C Trust helpline (0845 223 4424), Monday-Friday, 12-6pm (Thursdays till 7pm), or log on to www.hepctrust.org.uk
