REAL LIFE: Beating the stigma of hepatitis C

The cast of The Kings Theatre's pantomime, Snow White, on press launch day. Picture: Malcolm Wells.

What’s on from Friday, December 15 to Wednesday, December 20, 2017

0
Have your say

IT’S an illness with a negative stigma attached to it. Many choose to distance themselves from those diagnosed with hepatitis C.

But Brian Stuebs, 47, who was diagnosed with the virus 11 years ago, wants to change those perceptions.

Hepatitis C sufferer Brian Stuebs who is using his experience to help others.                           Picture: Malcolm Wells

Hepatitis C sufferer Brian Stuebs who is using his experience to help others. Picture: Malcolm Wells

Brian, from Clanfield, has turned his life around and now volunteers to help others diagnosed with the virus.

He hopes not only to raise awareness about hep C and the treatment available, but also how to avoid getting it.

But how did Brian contract the illness? It started when he was younger and a heroin user.

‘If you’re sharing drugs with somebody, it’s very contagious and easy to pass on,’ he says. ‘When I was using heroin I always used clean needles. I had grown up with lots of messages about HIV. I made sure I never shared needles, but no one said anything about sharing spoons or other equipment.

A lot of my friends shunned me

Brian Stuebs

‘My GP tested me in 2000 but no one told me until 2006 when I was in hospital with pneumonia. The doctor said “did you know you’ve got hepatitis C?”. I said no and that was it, he walked off. I was shocked. I thought I had been careful.

‘If I’d known someone had an old needle I wouldn’t have used the same water as them. But when you use these drugs you don’t notice these things and people tend to lie.

‘I was scared. I knew it was a liver disease but I didn’t know if there was any treatment for it.

‘Being stuck in hospital and not being able to find out left me scared. When I came out I looked it up and found out there was treatment. When I talked to people who had been through it, it was like what they give you for chemotherapy.’ Brian didn’t want to go through those side effects.

In 2012 he was offered the chance to take part in a clinical trial at Queen Alexandra Hospital, Cosham.

It was a 16-week cycle and he took a pill each day. It had a 99 per cent success rate.

He was tested three months after the end of the treatment, again at six months and then a year later – and he was clear of the disease.

‘That was brilliant,’ he adds.

‘Luckily because I hadn’t been drinking it hadn’t affected my liver that much.

‘I will have Hepatitis C antibodies for the rest of my life but I no longer have the live virus. It’s not destroying my liver any more.

‘There are side effects for some people but the medication is very targeted,’ he adds.

‘My mental health improved. I was eating a lot more. It meant I didn’t want to go back to taking drugs.

‘I moved from Hayling Island to get away from the people I mixed with. If I’d stayed I would have ended up killing myself. It’s too easy there and it’s too hard to get on and off the island.’

Brian is now working to help change perceptions about the disease and making people aware of how it is contracted.

He volunteers for the charity Inclusion as a mentor who supports patients and staff.

‘Education is key. Knowing what something is and getting the message out there to people makes a massive difference.

‘Even now professionals still have no idea about it. We are trying to do talks to let people know about it. It’s always been a niche disease.

‘It wasn’t something most doctors came across but it’s something that if the government put the money in, they could eradicate.

‘I want to support other people going through the treatment. There is a testing event and there are clinics where people can go to get treatment.

‘Trying to get people to travel to hospital isn’t something people want to do. If we can take the help to them we will.’

There are clinics across the area including in Portsmouth, Fareham, Gosport and Havant.

‘I’m helping others so they don’t have the same lack of knowledge as me.

‘Even with the new treatments, people still need support. People think they are going to die. They don’t know there’s treatment out there.

‘Most people get into drugs because they think it’s fun but then finding out you have a virus that could kill you changes your mind about it all. It did for me.

‘The treatments are amazing now. People shouldn’t just ignore it.

‘A lot of people bury their heads in the sand or use it as an exercise to take more drugs.

‘I was lucky with my family because my mum is a nurse so she understood.

‘A lot of my friends shunned me because the only blood virus people know about is Aids. There is a real stigma about it.

‘To most people, it’s a dirty secret. Trying to get people to talk about it and understand how to help themselves is a massive thing.

‘I wouldn’t go back to how it was. It’s nice to now have parents who are proud of me.’

ESSENTIALS

The charity Inclusion aims to increase awareness, testing and treatment, with patients being offered ongoing support.

It also works to try to reduce the stigma and myths that surround Hepatitis C and blood-borne viruses in general.

Anyone who has a positive result will be offered ongoing support and a referral to their local hepatology (liver specialist) clinics.

At several hubs they have support groups running alongside hepatology outreach clinics.

They offer patients hepatitis C treatment, mainly from their local hubs.

Here is a list of the Drop-In Clinics run by the hepatology team at Queen Alexandra Hospital, Cosham.

•Campion House Recovery Hub, Southsea, Tuesday 9.30am-12.30pm.

•Orion Centre, Leigh Park, Havant, first Wednesday of every month.

•Gosport War Memorial Hospital, Avalon Centre, Gosport, first Friday of every month.

•Fareham Avalon Centre, third Friday of every month.

To find out more about the charity, please visit inclusionhants.org.