Posted: 22-Feb-2007 << BACK
Belfast Telegraph 19th February
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
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 learned 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 a 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.
Indifference
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.
Compensation
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'Oral 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.
