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Last Updated: Sunday, 9 October 2005, 23:01 GMT 00:01 UK
Giving up anonymity to fight Hep C
By Jane Elliott
BBC News health reporter

Ron Metcalfe
Ron wants to speak for the 'silent majority'
When Ron Metcalfe was first diagnosed with hepatitis C he was advised to keep it a "secret" because of the stigma linking it to injecting drug use.

But Ron was determined to do the exact opposite.

So he set up a website to provide support for others in the same position as himself, as well as to chronicle his own fight with the potentially fatal condition.

His was the first UK blog by someone living with and having treatment for hepatitis C.

Secret

"It was a total shock when I was first diagnosed. I had never heard of hepatitis C. I barely even knew where my liver was," he said.

"After being advised not to disclose my diagnosis, I kept it 'secret' for several months, but I felt uncomfortable about being dishonest when people asked 'how are you?'.

None of us, including injecting drug users, deserves to have this virus and none of us 'have only ourselves to blame'
Ron Metcalfe

"When I began to tentatively tell some people I encountered no stigma, so then became straightforward about it with people - which felt much easier and more in keeping with my nature."

As he started his arduous treatment, Ron, a family man and a professional counsellor in his 50s, from London, decided to strike a blow for the "silent majority" with hepatitis C who were too frightened to speak about their condition.

"I decided to write a blog. I thought a lot about this issue of 'keeping it quiet' and decided this feeds into the stigma and continues it.

"It will only be when people like myself straightforwardly identify themselves as having this virus that the stigma will be challenged - it is not just injecting drug user who get this virus.

"So I decided it was important to use my full name and own up that I have the virus although I am not an injecting drug user. I have never experienced any discrimination or judgement from the people I tell."

A recent report by the Hepatitis C Trust said Britain was "failing" on hepatitis C and unless urgent action was taken on tackling it, thousands of patients could die prematurely.

One of the major problems was that many people with the disease were unaware that they had it and so they did not take action, it said.

Ron is unclear when or how he contracted the virus, but suspects it could have been either from blood products used in an operation he had in Canada, an unhygienic dentist he visited, or mass inoculations he had.

Fight

But he says that the reasons for the virus are unimportant and that the important factor is beating it.

Hepatitis C
It can seriously damage the liver and its ability to function, mainly spread through infected blood or other bodily fluids
In England the number of people infected with chronic hepatitis C is estimated to be up to 500,000
It can take decades for the symptoms to appear

"If there is a stigma about having hep C, it is that it's the virus of injecting drug users - who by implication, have only themselves to blame for catching it.

"There are a great number of people with hep C for whom injectable drugs are not part of their lifestyle - career professionals like myself, haemophiliacs, health care professionals.

"None of us, including injecting drug users, deserves to have this virus and none of us 'have only ourselves to blame'."

Prior to diagnosis, Ron had been feeling unwell for some time. He suffered pains, fatigue and digestive problems for a number of years and doctors feared he might have irritable bowel syndrome.

"I got to the point of being exhausted and to the point of being emotionally weepy and tired. My GP thought I might be depressed and prescribed Prozac which I took. I had various skin rashes and I have still got liver spots.

My commitment to my liver goes above and beyond the medical advice
Ron Metcalfe

"I had a number of things like that and it was finally when I was feeling like I had flu and could not get out of bed that I want back to the GP and said that I was ill."

As Ron explained, the symptoms are very vague and easily missed, for which he blames no one.

He was told he would have to undertake the 48-week Pegasys, or pegylated interferon, treatment.

Before undertaking the course and during it, Ron kept himself healthy, gave up drinking, improved his diet and had complementary therapies to rid his body of toxins. He also did regular yoga.

Virus

Tests at the 12-week stage showed that Ron's hepatitis C was "undetectable" and he hopes that the drugs course, which has a 50% success rate will prove a "cure" in his case.

"They do not say though that you have been cured, if it works, they just say the virus is undetectable, because in the future they might have even more rigorous tests which might then be able to detect it."

But he is hopeful that all his careful work protecting his body will stand him in good stead.

"I think I have a good chance. My commitment to my liver goes above and beyond the medical advice."

About 200 people a day visit Ron's blog, which records his struggle with the treatment.

Trawls of his site reveal that not only is it avidly read by others with the disease, but it is also used by health professionals and specialists as it provides a grassroots account of living with hepatitis C.

Ron says blogs like his help provide a support group for others with the condition.

It is proving so popular that he has been approached by a drug company looking at funding a pilot scheme which would allow the blog to be used within the NHS for this and other conditions.

This could give bloggers protected confidentiality and might even include a professional in the role as "webmaster" to answer questions and provide support and encouragement.




SEE ALSO:
'Test tube' hope for hep C drug
11 Jun 05 |  Health
Huge posters focus on hepatitis C
30 Jun 05 |  Nottinghamshire
Executive takes on 'killer' virus
29 Jun 05 |  Scotland


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