Science Interviews

Interview

Sun, 14th Jun 2009

Living With Hepatitis - A Patent's Perspective Part 1

Wendy

Listen Now    Download as mp3 from the show World Hepatitis Day at Birmingham University

Ben -   The scientific developments by Professor McKeatingís team donít just help us with treating the diseases; the more we understand the virus, the less fear we hold.  This is especially true for those who are suffering from the disease.  So I spoke to Wendy to find out what brought her to the World Hepatitis Day event.

The Hepatitis C Trust LogoWendy -   Well, I had hepatitis C for approximately twenty years.  I had treatment five years ago and Iíve been clean ever since, you know, clear of the virus should I say.  And I have a lot to do with the Hepatitis C Trust; I go to conferences, Iíve helped set-up a Hepatitis C support group, and they just invited me along today so I thought it would be a really good opportunity to see how the other side works, really, and what progress there is and what new things are going to come about to help people with the virus.

Ben -   Weíve heard today that in the course of the last twenty years there have been some very dramatic leaps forward in the understanding the science of hepatitis C.  As someone who suffers from the virus, do you appreciate being told all the nitty-gritty; is it helpful for you to know some of this deep science?

Wendy -   Yeah, I think so.  Twenty years ago, when I was first diagnosed, they phoned me up and said I needed to come to the liver unit because I had this hepatitis C virus.  I phoned my dad and I told him and he said I think itís something to do with AIDS.  That was my first thought.  For my first three years I was back and forth from the liver unit and twenty years ago they didnít really tell you a lot.  I didnít really understand what it was, anything about it, so I walked away and forgot about it, basically because I didnít know the implications of it.  So for five to seven years I walked around forgetting that Iíd got this virus because I didnít really know anything about it; maybe itís I didnít want to know, I donít know but I think not enough was said to me to understand.  They may have told me but on my first appointment I didnít really have a clue what they were on about so I think people really need to know because it gives them more of an understanding as to the seriousness of it and the implications of having it long-term.  I think the media are getting better with it now but I still donít think itís enough to let people to know how serious it is.

Ben -  So you would support World Hepatitis Day from both a personal and professional view.

6 hypodermic needles on luer connectorsWendy -   Oh, absolutely, absolutely.  I work for a drugs service.  We have approximately 800 clients.  We recognise that approximately 25% of those have got the hepatitis C virus and we havenít even tested all of them.  Itís just so scary because of the amount of clients that are walking around that donít know that theyíve got it, that could be infecting other people that havenít got it, and I just think itís really scary and I donít think they understand.  The majority of people that you talk to will say ďoh, thatís that thing that kills you, isnít it?Ē  Well no, not necessarily, but left untreated it will really have a detrimental effect on your health in the long-term.  They just donít really understand.

Ben -   And having just had a tour of the research facilities here do you think youíll encourage more people, both healthy and people who have hepatitis, to actually get involved in the research?

Wendy -   Yeah, definitely, you know itís just about raising awareness from my point and coming to places like this and having tours and speaking to clinical directors and research students, it gives more people an insight and Iím excited now because I know that thereís more research being done and theyíre becoming more better treatments for people; if they have more treatments for people then thereís a better success because, at the moment, a lot of people are failing the treatment because of the side effects because they just canít manage it so, if we can make that easier for people then more people can  get treated.  I mean, we canít treat 50% of our clients that I work with because of their chaotic lifestyles, the support network they donít have and the vulnerability.  We couldnít contemplate putting them on treatment because theyíd fail because of the extent of the side effects that it has on people, you know, we need to be looking at making it easier for people to have treatment.

Ben -   Wendyís position, not only a former patient but actively working with hepatitis patients in the community, highlights one of the benefits of World Hepatitis Day.   Itís a unique opportunity for researchers and clinicians to communicate with patients and that means that everyone can benefit. 

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