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Last Updated: Friday, 4 May 2007, 23:10 GMT 00:10 UK
'Louie, me and hepatitis C'
By Jane Elliott
BBC News, Health reporter

Gemma Peppe
Gemma wants the film to educate professionals
When Gemma Peppe needed a subject for her MA in documentary research, she decided to use her own battle with the potentially fatal liver condition hepatitis C.

She hoped it would be an opportunity to raise awareness about the condition, which is thought to affect up to 500,000 people in the UK - 10 times more than those with HIV.

She also wanted to learn more about her condition, and the treatment options available to her.

Gemma attracted the support of the Hepatitis C Trust and the Community Channel, and her film became a documentary of her treatment over a year - and how it affected her 14-year-old son Louie.

Now 'Louie, me and hepatitis C' - a documentary narrated by Gemma and including her video diary - is being used to educate the public and medical professionals.

Fear

Gemma, a single parent, aged 40 from London, first became sick in the late 1980's following drug use.

She became weak and jaundiced and spent months in hospital. But at the time there was no test for the disease and Gemma was told she had non-specific hepatitis.

The fear was physical, I could feel it coursing through my veins
Gemma Peppe

None of the medical professionals she saw seemed to know much about it, and as Gemma grew stronger she forgot about her liver problems and got on with her job in the music industry.

But then she started to feel tired and have unexplained illnesses.

Tests were ordered and in January 2002 she was told she had hepatitis C.

"I did not know about hep C and my doctor did not either.

"He just said he was sure I would be fine. But when I told some people about what I had they said 'you can die from that'."

Gemma says she was terrified.

"The fear was physical, I could feel it coursing through my veins."

Research

So Gemma embarked on her own research.

She found that her ill health could continue, get worse and eventually kill her so she looked into having a treatment that, if successful, could rid her body of hepatitis C.

In the film she said: "I felt that, at my age, I'm too young to resign myself to a life of not working, or just working part time. I don't feel, for me, this is a full life.

"This is just half a life that I'm living. It really swayed my decision. It made me think 'I've got to give it a go'."

So she decided to embark on the Pegasys, or pegylated interferon, treatment - a version of a naturally occurring molecule - and chronicles her progress in her film.

Gemma says: "The treatment was very like chemotherapy and by the end I was so debilitated that I could hardly leave the house."

She endured appalling side effects - exhaustion, flu-like symptoms, raging hormones and thinning hair.

In the film her son Louie agrees that it had been an ordeal: "You've done well. You've been annoying, you've been horrible at times...but you've done well."

Gemma and son Louie
Louie is very proud of his mother's film

But at the end of the course she was given the devastating news that she was one of the 50% for whom the treatment had not worked.

"Now I just have to hope that there will be another treatment that will work for me," said Gemma.

"Although I stopped the treatment a year-and-a-half-ago I am still suffering from the side effects.

"The odds of 50% seemed like a good gamble to take, but if I knew then what I know now."

Moving

Charles Gore, from the Hepatitis C Trust, said the film will do a great deal to improve understanding of the condition.

"It gives a remarkable insight into what it is like to have hepatitis C.

"It is also extremely moving - Gemma is so open about why she wants to undertake a year of often gruelling treatment, how important it is to her that the treatment works and the challenges of completing it.

"It was wonderfully brave of her to let the camera follow her and watch her as she is given the crucial news about whether the treatment is working.

"Anyone who sees this film will appreciate how important it is for people with hepatitis C, and especially those on treatment, to receive adequate support and yet how often that support is lacking.

"But the film is not just Gemma's personal story - it is also an examination of some of the major issues surrounding hepatitis C and in particular the problem of stigma.

"Gemma is unusually candid in disclosing that she contracted this disease through drug use but many people are scared to admit to having hepatitis C, even when they contracted it another way, and many more are dissuaded from getting tested.

"As the film so vividly shows, stigma is damaging not just to individual lives but to the public health of the country and it is simply the product of ignorance.

"Anyone in any way connected with hepatitis C needs to see this film and with up to one in 100 of the UK population infected, that means just about everyone.'

The documentary will be broadcast at 11pm on the 11 and 18 May on the Community Channel. .


SEE ALSO
Ministers in 'killer virus' drive
26 Sep 06 |  Scotland
Change urged after Hep C reports
23 May 06 |  Scotland
Files on infected blood destroyed
13 Jan 06 |  Scotland

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