Posted: 3-Aug-2005 << BACK
Last month, the East Anglian Daily Times ran a front page story about the prospect of a Hepatitis time bomb. Having been inundated with correspondence about the topic, here, one sufferer tells Deborah Watson about his experiences and why hes desperate to raise public awareness of the disease.
Martin Bolton is 52 now, but every day he lives with the reminder of a brief period in which he like thousands of others experimented with drugs. Back then, in the heady days of the 1970s, Martin threw caution to the wind to spend a few weeks using injectable amphetamines. The result of that decision is now making itself apparent in every aspect of his daily life. For Martin, a father of two from Bury St Edmunds, is a sufferer of Hepatitis C. Week in, week out, he follows a tedious course of tablets and self-administered injections in an attempt to treat his disease.It is a course of treatment which is neither guaranteed nor pleasant. Indeed, such is the lengthy list of side effects related to his medicine Martin frequently suffers bouts of severe depression, anger, night sweats and breath shortage. But, without taking such a cocktail of medication, this self-employed electronics engineer could well be on the road toward eventual liver failure and death. Theres nothing pleasant about this medication, but its my one hope in terms of trying to treat this disease, explains Martin bluntly.I put up with the anaemia, the mood swings, the upset stomachs and the rest, just because theres a chance that I can be free of Hepatitis. You wouldnt wish the side-effects on anyone, but then, without them, youre steering a course toward needing a liver transplant when the disease does its worst.
Martin first discovered he had hepatitis C in 1993. It was only when he presented himself for a blood donor session that a screening confirmed he had the virus. On the one hand, this was a deeply fortunate find. On the other and rather terrifyingly it was some 20 years too late. By the time I was diagnosed, Id already been a blood donor for more than two decades, he says of the discovery. It was only when a new obligatory test came in that I was picked up. Of course, by that stage, Id passed it on to hundreds of other people. As it turns out, I was doing the wrong thing by trying to do the right thing. Given the number of people who have experimented with injecting drugs in their younger years, have had tattoos or piercings from unsterile equipment, or even shared a toothbrush with a nave sufferer, its hardly any wonder that medical professionals are envisaging the identification of thousands more cases in the coming years. Indeed, with the virus capable of laying dormant for very lengthy periods, its said that around 200,000 people in England are suffering from it with eight out of ten people having no clue that they themselves are among that group. I predict that theres going to be a massive problem as a result of this disease in the next few years, insists Martin. We are pushing it to one side because its a long term condition and thats a big mistake. Its potentially going to mean around 50,000 liver transplants in the next 20 years because of Hepatitis C alone. That wouldnt be the case if people were identified early. There is effective treatment out there, and, if sufferers are picked up and directed to that treatment, then they should start to put the virus behind them for good. But there lies the biggest problem. The virus itself is such a subtle one at least until it really starts to ravage the body in that a sufferer may only present themselves to a doctor with flu-like symptoms. And even then, it relies upon a GP having the concern and curiosity enough to investigate a possible Hepatitis link. A lot of the problem is that still so little is known about Hepatitis C in particular, says Martin. The A and B variants had existed for a while, and then C came along which tends to react far slower and less aggressively. Certainly from my own point of view in the early 1990s, I found that doctors were explaining what they could about it but even that wasnt very much. The reality is that only the younger generation of doctors will have been trained to spot the signs of this particular virus. Im concerned that a lot of sufferers just wont be picked up because their symptoms are too vague, and the awareness is still not good.
Martin was lucky enough to be put on a treatment trial from the time of his diagnosis, and he is currently on a new course of medication which he hopes will steer him toward a life completely free from the virus. Today, he is happily married to Carol (who, despite some rumoured concerns about contraction through sex, is not a sufferer), and has brought up two healthy children. At his west Suffolk home, he is meticulous about a routine in which every potentially contaminated article from his towel to his razor or toothbrush is coloured red, and only to be used by him. Its precaution, he says cheerily. Im doing what I can to make sure no-one else can possibly contract it from me, but, in all honesty, Ive raised two children who dont have the virus, and I feel very positive about getting rid of Hepatitis altogether. I really believe this treatment is going to work for me, so the side effects are something Im happy to live with for now. Despite this relatively positive outlook, he is all too aware of the slippery slope he may have been on by now, without the initial identification test. Because of that, he has made it his mission to alert others about the complexities of the disease. If I hadnt been picked up at the time of trying to donate blood, I imagine Id have been deteriorating with things like arthritis symptoms, brain fuzz, and severe night sweats by now, he accepts. I find it depressing to think that theres a lot of less lucky people who will start to go through such symptoms, and who may struggle to understand whats happening to them. He adds: I set up a website a few years ago, simply because I want people to be able to understand the virus. Its getting 4,000 hits a month, and I know that people are finding it a valuable source of support and help. But my one effort to make people understand Hepatitis C is just not enough. I need people out in the street to know that, even if theyre a clean-living type who never touched drugs, but has had a tattoo as many young people do these days they could be carrying this. I also want the doctors to do their bit too. I want them to realise that the investment in treatment today is far better than the healthcare system having to foot the bill for hundreds and thousands of liver transplants down the line.
Commenting on an article in the East Anglian Daily Times last month, in which Dr Gareth Richards spoke about Hepatitis C, Martin says he feels frustrated by the response of some people in the medical profession. Dr Richard implies that treatment is an ongoing situation, when in fact, it takes a course of 24 or 48 weeks, he says. After that treatment, the virus should be stopped altogether and we know its successful in 85% of cases. I think we need to put the time and money into dealing with the problem now, and not waiting years down the line for when the time bomb will finally go off and the fallout will be even worse.
Martins website can be found at www.theboltons.plus.com
Alternatively, e-mail him directly at martin@theboltons.plus.com
To find out more from the Hepatitis C Trust, go to www.hepCuk.info
