I have Hepatitis C Ė itís a bit of a bummer but you groan and move on. I had no idea that I had this virus. I was having routine blood tests when it showed up. It turned out that Iíd contracted it through infected blood, given to me as a transfusion during the birth of my youngest daughter, Sam, in 1971. (Thank God for those doctors that keep and protect medical records!)
So by the time I was diagnosed, Iíd had hep C for over thirty years. The virus actually works very slowly, over decades. The word Ďhepatitisí means inflammation of the liver, and thatís what happens Ė the liver gets inflamed and scarred and you can get cirrhosis and liver cancer.
In fact I do have cirrhosis. I could still have a good few years Ė even decades Ė of life left but itís hard to say. I could be facing liver cancer tomorrow. What I can say is that having hep C means that I live with a sharp sense of my own mortality Ė which in many ways makes life more vivid and immediate. It makes me even more determined to just get on with things.
But when I was first diagnosed, I didnít take it too seriously. I am only just starting to experience symptoms now, and theyíre quite mild. I knew that I had it and I felt fine, and I also knew the impact of the virus could be very gradual. I think I was also affected by the general air of indifference that hangs over hepatitis C. Most people just donít know that this virus exists, or what its impact is. Itís not taken seriously.
Hep C has been called a Ďsilent killerí because you can go for years with no symptoms. It is also a silent killer because itís just not being diagnosed and dealt with in an effective way. Nine out of ten of us who have hep C simply donít know theyíve got it. The Government in this country doesnít seem to have had a very vigorous response to hep C. If you look at somewhere like France, half the people with the virus have already been diagnosed. But in this country weíre way behind; only 1 in 10 people with hepatitis C have been diagnosed.
Well Iíve always been a bit of a Ďwhistle blowerí and Iím not going to stop now. I want to blow the whistle on the fact that hep C must be taken seriously as a public health challenge and must get the attention and resources that it needs.
I am astounded that the Government has spent £40 million on telling the public about the switchover to Digital TV Ė but only £3 million on raising awareness of hepatitis C, a serious condition which can have a massive impact on peopleís quality of life and which can ultimately kill them. Iím not sure what that says about governmental priorities, but I do know it means that people arenít getting tested, diagnosed and treated for this virus. We donít even have a proper study of the level of infection here in the UK, but The Hepatitis C Trust estimates itís up to half a million people. And everyone with hep C deserves proper care and treatment if they want it.
Itís especially important that people like me, who are over fifty and who had blood a transfusion before 1991, come forward for testing
The other priority Ė and the other reason to start speaking out about hep C Ė is to prevent its transmission. We need a hell of lot more resources in awareness raising, and in challenging the stupid stigma that surrounds hep C Ė this is just the same as the way that stigma prevented people with HIV from getting a fair deal.
The fact is, hepatitis C can affect anyone. Itís passed on through blood-to-blood contact Ė your blood or broken skin needs to come into contact with someone elseís blood. It doesnít seem to be passed on through sex very easily, (though this can happen) but it can be transmitted through unsterilised equipment like syringes and needles. Or as in my case, through blood transfusion before 1991 (when the NHS started to test donated blood for the hep C virus).
The other reason to start making a bigger noise about hep C is that there are some promising treatments Ė conventional and alternative medicines seem to work for different people and up to 50% of people who get interferon treatment get rid of the virus. We need to be focusing on effective treatments and making sure people get access to them.
One of the most positive things for me since being diagnosed is seeing the way in which many people with hep C are taking control of their health and their treatment. A group of people with hep C started The Hepatitis C Trust in 2001, and Iíve just become a patron of the Trust. Their website was the first place I went when I was diagnosed. They are doing brilliant work in trying to break the silence surrounding hep C, to make sure that people with hep C get the services and treatment they need, and to link people up to local support groups.
Through them, Iíve been meeting other people with hep C, and having a bond and common experience with other people in the same boat is really helpful to me. Iíll be adding my voice to the work of The Hepatitis C Trust Ė and to the voices of other people affected by hep C - in the period ahead.
In a way, campaigning with The Hepatitis C Trust is business as usual for me. Iíve always felt that Ďactivism is my rent for living on this planetí and Iíve always wanted to celebrate and protect the human body. In a way, speaking out about my hep C is just carrying on what I helped to start at The Body Shop. Life has just taken a more interesting turnÖ
Re : Hepatitis C And Me By Fungai Chuma on September 12, 2007
I'm saddened by the passing away of Anita.She was my hero and was looking forward to working with her in our fight against Hep c stigma.Im gutted.I'm sad.I'm confused.I'm helpless.Although I didn't know Anita personally,I was boasting to a few people whom I have come out about my hep c diagnosis saying - Anita will help the whole world destigmatise Hep c.She was my world and my world has crumbbled around me, I have no shelter.I hope someone is going to take on the work that Anita was doing.I hope her family will be strong.They will be in our prayers.
Re : Hepatitis C And Me By Annetta Slade on September 10, 2007
I have just seen the news and I don't quite know what to write. I know you won't read this but I want to say Anita thankyou for being you for your passion for your love of life and for your giving heart. I only met you a few times with the Body shop at Home but you made us all feel part of your life and you put a fire in our hearts. I pray God blesses you and that you spend eternity with him, his son and those you admire and who have given thier hearts for good as well. I will miss you being in our faces challenging us and inspiring us but your fire will never go out.
Re : Hepatitis C And Me By david mcmaster on August 9, 2007
I too was diagnosed with Hepatitis C in 1998 and worried a lot about my future and the future of my family. I'd come to realise that I am not the only one suffering from this dreadful virus but my family also suffer even though it takes time to take effect, still we know that the virus is there.
I don't know what is more devastating, the fact that there is so many people suffering from this virus or the fact that the British government aren't doing a lot to eradicate it, it makes you wonder!!!!!
I have read many articles with regards to cures for hep C and the treatments available: interferon and ribivarrin, however, the article that got my attention was one from the University of Virginia hep C drug trials where 99% of those affected had been free of the disease after treatment, good news for all sufferers.
I have been trying to find out more about these trials and of the professor that is leading them, professor mitchell shiffman and if my search comes up with even better news then I will share.
Best of luck to you Anita and all of those who try and give themselves a better quality of life.
Re : Hepatitis C And Me too By Fungai Chuma on June 12, 2007
I have been recently diagnosed with Hep C virus.Thanks for the advice.I will visit all the websites listed.I am based in New Zealand and am an African migrant which makes the stigma severe on my part.Coming out at this stage to friends is difficult because of people's attitudes.I will be happy to read more on how people like Anita are copying so that I can get strength from their experience.
Re : Hepatitis C And Me By Teresa Jacques on April 28, 2007
I was diagnosed with HepC (genotype 3)in 1993 after screening as a blood donor. The possible trace was to a tattoo I had done in 1979 in Kings Cross (London) I had Alpha Interferon treatment in 1996, but to no avail, in December 2002, I was told liver transplant was inevitable and in May 2003 I had my first transplant, but HepC virus attacked my new liver, so in August 2004, I underwent a 2nd transplant, successful, but I needed to have combi-treatment (interferon/ribavirin) for 48 weeks, this finished in April 2006 and now I can celebrate 1 year of being clear of virus. I speak about my virus and tell anyone who will listen about it. I do some voluntary work for Leicestershire Aids Support Services and they hold training days for those interested, in the ABC of Hepatitis and I go along and talk about the way HepC has affected me. I wish you so much luck Anita and I pray your future transplant ill be a success. Teresa
Re : Hepatitis C And Me By alistair mackinnon on April 19, 2007
I too only found out by accident but...am currently on the combi therapy.
there is also an article in the journal of gastro-enterology concerning a trial study of a multi/combi alt treatment for hep c that was positive
just some info hope it helps
Re : Hepatitis C And Me By carole on March 11, 2007
Hi Anita I was diagnosed with hep c in Spetember and was told it was through a blood tranfusion also in the early seventies. Luckily my two sons are both ok. I am currently on the 24 week treatment and cannot thank the doctors and nurses at North Manchester General enough for all the support they have shown me and my family. Thank you for speaking out about your hep c. I wish you well for the future. Best wishes Carole xx
Re : Hepatitis C And Me By Ann Moeller on March 10, 2007
Your life has indeed taken an interesting turn. My life took a similar turn 2 years ago when learning I had Hep C for 30 years. I elected to go through treatment in a trial study at a research hospital here in the USA. I am pleased to say the virus is now undetectable and I am almost a year post treatment. I am feeling better than I have in years and now want to speak out for Hep C and offer hope and encourage those who have this disease. Having and beating this disease have definitely changed my outlook on just about everything. I do hope you continue your work and find ways to help yourself feel better. Thanks for speaking out,
Re : Hepatitis C And Me By Douglas M. Smith on March 5, 2007
Please visit the site www.solagran.com This is a geuine message. The company has a substance called Ropren which has been clinically proven to overcome Hepatitis C. It is about to be approved for use by the Russian Pharmacopea (their medical regulatory body). Check out the company's mission statement. Unlike other "drug" companies, this biotech company makes no reference to profits, nor return on shareholders funds in thier mission statement. Thier chairman, Vagif Soultanov, is a medical doctor and PhD qualified biochemist originally from St. Petersburg... now residing in Melbourne, Australia.
Please check it out, it could save your life.
Re : Hepatitis C And Me By merryl on March 5, 2007
I have just received the good news that I did not aquire Hep C through a blood transfusion 24 years ago or any infection at all and thereby infect my son in childbirth, as I feared. For those unfortunate enough to do so,however,please may I tell you of a natural anti inflammatory pill,which I started taking 3 years for a bout of gastritis. It is called Serrapeptase by Robert Redfane whicn you can find on google.It was recommended by a friend, and cured not only the gastritis,but also a tooth abcess, which was only just beginning to appear.I understand that cirrosis is inflammation and this stuff is something to do with enzymes ,mulberry leaves and silk worm. It may sound a bit far fetched , but from one cynic, I can thoroughly recommend it, it apparently eats up any inflammation in the body and disperses of it naturally. I am sure the write-up on the net is worth a look.