Living Without HepC

As planned, Carol and I attended the Brighton FaceIt Campaign Exhibition on Friday and Saturday, as did Nick (and Vicky), Michelle, Sam and Catherine. All of these people feature in the photos on display and we decided to turn up and help staff give out pamphlets and talk to passers-by. The local person living with HepC, Nimrod, did interviews with the press. It was unfortunate that the pamphlets were delivered to the wrong address (in London) on Friday morning and had to be biked to Brighton, only arriving mid afternoon. While the exhibition created imposing and strong images it is noticeable that passers-by struggle to find the focus or a central point where they can engage to discuss the issue (and the lack of pamphlets particularly made this evident). But I gather there is talk of incorporating a table in future exhibitions to provide this sort of focus.

Obviously having the people in the photos on hand clearly added value to the exhibition, reinforcing the aspect of real people living with this disease and not just professional models. I also noticed how it reassured members of the public who are anxious about their own health to talk to someone who has first hand knowledge of Hepatitis C – if only to reassure them or advise them to see their GP about their medical questions.

There is clearly such a lot of potential that those of us living with Hepatitis C can add to the NHS Awareness Campaign, to champion the cause and help those who may unwittingly (or sometimes otherwise) have the virus to recognise the importance of seeking help to ensure their long term health. These days we are used to seeing celebrities being effectively used in campaigns (such as the NSPCC Stop It campaign, testicular cancer, etc) but with ‘newer’ issues it is those of us living with the virus, and who are prepared to speak up, that are in the vanguard. Let’s hope those running the Campaign recognise this and find creative ways to mobilise that potential.

One individual in the vanguard is Martin Bolton whose story has today appeared in a full page article in a national daily, The Express. On his own, Martin has managed to generate sufficient interest in his message about Hepatitis C awareness that two newspaper articles have recently appeared about him. This is a man with no prior media contacts, no knowledge of the communications industry but as a person living with Hepatitis C he has achieved the sort of publicity that the NHS Awareness Campaign needs.

And as someone also in that vanguard, I find it gratifying that this blog and it’s Forum have made an impact for those living with HepC.

I notice that the Forum has now over 100 signed-up members since it opened 16 weeks ago. This kind of response shows there is a need for a place on the internet for discussions about living with HepC whether it’s practical advice and information about the disease, the treatment or support through the experience. There have been over 1600 comments on 200 different topics made during this short time. The Forum has about 200 visitors every day, with many readers who don’t sign up or leave comments– but who do keep coming back to read what is happening.

I have heard a number of comments from people that they were warned off reading about Hepatitis C on the internet as there so many negative sites and horror stories out there. People say only those with ‘bad news’ have been motivated to write about their experiences.

So it has been important to establish a Forum where people can get ‘good news’ information and share the ‘bad news’ experiences in a way that helps and supports others. And have a banter and a laugh along the way – as a sense of humour and perspective is also required on this Hepatitis C journey.

This entry was posted on Tuesday, August 16th, 2005 at 3:24 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.