Bloody Hell: Body Shop founder's new battle

Dame Anita Roddick is on the warpath again. But this time her fury is driven by a personal trauma. She has been diagnosed with hepatitis C and is on a new crusade - to highlight the disease and the urgent need for greater awareness
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Indy Lifestyle Online

I am a campaigner. I've always felt that activism is my rent for living on this planet. Now I am campaigning on hepatitis C. It's different because it's personal - about my health. The more I learnt about it, the more outraged I became.

I discovered I was infected by chance three years ago when I went for an insurance medical. I didn't take it seriously at first. I felt so fit it didn't seem to matter; it was all insinuations. Doctors tell you the good things - I could be fine for another 10 years.

Only when I went for another blood test and found that my viral load had increased did I begin finding out about the disease. I started listening to my body - I hadn't noticed anything up to that point. I was 61 and if I felt tired, I put it down to ageing.

Now I have definitely started to have symptoms. I get itching on my wrists and ankles, fatigue and sometimes I get brain fog. There is a real reduction in the ability to concentrate - at least that's what I have found.

My liver is damaged - I have cirrhosis. The next stage is cancer. I could be in perfect health for another 10 years, or I could be gravely ill tomorrow and need a transplant.

I go every three months for a blood test and an MRI scan. I have been to see the liver transplant team at Addenbrooke's hospital in Cambridge. When the time comes, I hope to God there is a liver available. There is a drug treatment - interferon and ribivarin - and when the doctors suggest it, I will have it. But it's debilitating and, because of my age and high blood pressure. which I have lived with for years, it may not work for me. The doctors say let's wait and watch to see what happens with the disease.

I wasn't upset when I found out I was infected. It was not like being told you are diabetic. Everyone in my family reacted in the same way - by saying, 'What's that?' I think I was affected by the general air of indifference that hangs over the disease. It progresses so slowly. I can't emphasise enough how I was not shocked. I am a terribly pragmatic person. I thought, 'Oh, I have got that, now let's move on.' I am a pathological optimist. It's because I am Italian and I eat a lot of tomatoes. I have never met a depressed Italian.

I have not told my mother and I am not going to. She is 92 and lives in sheltered housing in Littlehampton. When she dies she wants her ashes to be fired into space on a rocket, to the theme tune from The Godfather. I have found a firework company that will do it. It is going to be spectacular.

The last thing you want to do to a 92-year-old is worry them. That is why I won't tell her. She doesn't listen to the radio or read the newspapers. I just want to make her exit joyful.

My family are so supportive of me. I have two daughters and three grandchildren. They want me to be as I am. They know I am a survivor and that I will do the best thing for myself - and if I am persuaded this is the best thing for me they know that is right. It wasn't any big decision to declare that I was infected. It was a case of when the time was right. I had to campaign on it. It's in the DNA.

My life hasn't changed. The only thing that has changed is the amount of energy I can put into things. Time for me is a real currency now. I am going to spend it doing the things where I can have a real effect. I have dispensed with the tedious stuff. I was invited to an event the other day to celebrate leading businesswomen. Uh, I haven't time for that any more.

I am campaigning on this because I can't understand how the Government can spend £40m to tell the population about going digital but only £2m raising awareness about hepatitis C. I don't understand why, with the amazing health service we had when I was growing up, we are lagging behind Europe. And I don't understand why there is no information in GPs' surgeries. It is conspicuous by its absence.

I caught the virus from a blood transfusion at the birth of my younger daughter, Sam, in 1971. It was a really difficult birth in the maternity home at Littlehampton and they gave me a lot of blood. I am so lucky the doctors kept the medical report so I was able to trace the cause.

The Government pays compensation of £20,000 to people who contracted hepatitis C from a blood transfusion and £25,000 when they develop cirrhosis - but only if they can prove it with the paperwork. I received both payments and gave them to the Hepatitis C Trust.

I have become a patron of the trust because it is so important people are aware of the risks. If you had a blood transfusion before 1991 [when screening for hepatitis C was introduced] or if you think you have been in contact with contaminated blood, then go and get tested. It will free you of worry if negative - and you will be in control of your life if it's positive.

Since I sold the Body Shop to L'Oréal I have been working as a consultant to the companies, but I am reducing that to about 25 days this year for each of them. My foundation, which I put £30m into, is working to develop leaders in social justice and human rights. I am involved in projects to rebuild New Orleans and with prisoners in Angola and against sweatshop labour in Bangladesh. There are other projects in Darfur, east Africa, India and Canada.

When I was first diagnosed with hepatitis C, I contacted the Hepatitis C Trust and they never asked if I could do something for them. They said, 'What can we do to help you?' Only later they suggested that by speaking up I could help save lives.

Most people just don't know that this virus exists, or what its impact is. It's not taken seriously. Hepatitis C has been called a 'silent killer', because you can go for years with no symptoms. It is also a silent killer because it's just not being diagnosed and dealt with in an effective way.

Nine out of 10 of us who have hepatitis C simply don't know they've got it. If you look at somewhere like France, half the people with the virus have already been diagnosed. But in this country we're way behind; only one in 10 people with hepatitis C have been diagnosed. I've always been a bit of a whistle-blower and I'm not going to stop now.

When I worked in the Body Shop we used to ask ourselves, 'If we do this, will it benefit them?' If you can affect one person's life, it's worthwhile.

Celebrity carriers could raise awareness

Dame Anita Roddick is the biggest British celebrity so far to declare she has hepatitis C but she is by no means the only one infected with the virus. It is prevalent in the music industry, among rocks stars who dabbled in drugs decades ago (it is transmitted through shared needles) and have now discovered their livers are slowly rotting. Name any major band from the 1960s and 1970s and the chances are that at least one of their number will be carrying hepatitis C.

The need for greater awareness is urgent. Estimates of the numbers infected in the UK vary from 200,000 to twice that. But despite a campaign launched by the Government, the numbers coming forward for testing have fallen, to little more than 1,000 a quarter. The disease is treatable with drugs if detected early but many are diagnosed late and it is already the main cause of liver transplants.

Professor William Rosenberg of Southampton University describes hepatitis C as "a public health epidemic" and Charles Gore of the Hepatitis C Trust has appealed for other celebrity carriers of the virus to join the Body Shop founder in her campaign. If they were to do so, we might see real results.

Dame Anita, 64, has adopted an attitude of "extreme pragmatism" to her illness. Instead of letting it get on top of her, she is treating it as an opportunity. Having known little about hepatitis C before she was diagnosed, she declares herself "outraged" by what she has found and "excited" by the opportunity to do something about it. Campaigning is in her DNA, she says, and here is a chance to help.

Like Jane Tomlinson, the 42-year-old mother diagnosed with terminal breast cancer in 2000 who has defied her doctors and raised more than £1m for charity through her feats of physical endurance, Dame Anita's positive outlook and fighting spirit command admiration.

It may not make a difference to the outcome - research shows that the widespread belief that thinking positively prolongs survival is a myth. But it can make a big difference to the quality of life remaining.

Some people cope with adversity better than others. Doctors never like to admit this for fear of adding to the burden on patients. Dame Anita has found an amazing way of taking her mind off things with, we must hope, amazing benefits for others.

Her determination not to tell her mother of her plight is part of her pragmatic approach. Why upset an elderly lady in the evening of her life, for whom she is planning a "joyful exit"? But most parents want to know about the trials and tribulations of their offspring, so that they may share them. It is why they brought their children in to the world.

Jeremy Laurance, Health Editor