- For almost as long as she can remember, Jane Wynn Parry
has felt unwell, plagued by bouts of extreme fatigue and debilitating pain
which leave her unable to work and confined to bed.
-
- Over 20 years she went to numerous doctors and specialists
who either dismissed her problems as "all in the mind" or said
they could find no explanation for the exhaustion and sickness she suffered.
-
- Then, six years ago, she was given a devastating diagnosis:
she had hepatitis C, a potentially fatal liver disease which is caught
from infected blood.
-
- "I was just totally shocked," says Jane, 44,
who is from south London. "It has taken me a long time to come to
terms with the fact that I have a chronic, infectious disease which dominates
my life and could kill me. It affects everything - my work, social life,
relationships with men. It is very difficult to live with."
-
- Hepatitis C has been dubbed "the silent epidemic"
by doctors, who are warning that rates of the disease in Britain are soaring
while most people remain unaware they are infected. More than 400,000 people
in the UK have the disease, and 100 new infections are occurring every
week. It is already the main reason for liver transplants, and experts
say that by 2020 it will be killing more people than Aids.
-
- Hepatitis C causes inflammation of the liver, and in
severe cases can cause jaundice, cancer and liver failure. Early symptoms
include weight loss, vomiting, flu-like feelings and fatigue. Yet because
many people do not suffer any symptoms, and those that do are often misdiagnosed,
only 20 per cent of victims actually know they have the disease. Less than
one per cent are receiving treatment, even though 60 per cent could benefit
from the drugs available.
-
- The virus is spread via blood, but was only identified
in 1989. A screening test was introduced in 1991, but before then, many
thousands of people were contaminated by blood transfusions during operations.
-
- Jane Wynn Parry believes she was infected from a blood
transfusion she was given at birth. "All through my teens, I just
felt generally unwell," she says. "I would just have bouts of
extreme fatigue when I would just have to go to bed for days at a time.
I had pain around my liver area, but no-one even knew about hepatitis C
then. It was very depressing, especially as there were times when there
was an inference from doctors that it was all in my mind, or there was
nothing really wrong."
-
- The exhaustion and pain meant it was difficult to work,
and an endless round of GP visits, hospital appointments and specialist
referrals still failed to find a cause for Jane's problems.
-
- Then, in 1998, a doctor said she had gall bladder problems
and ordered a series of tests. "I was in his room expecting to hear
about the gall bladder, when he just said, almost by-the-by, 'Oh, you have
hepatitis C'. They had done a hepatitis C test without telling me. I went
into shock, but in a way I was relieved because I finally knew what was
wrong with me."
-
- However, Jane discovered there was very little support
for people with the disease - and still very little awareness among doctors
and the world at large about it. She suffered a further blow when tests
showed that the type of virus she had meant the drug treatments available
would not work for her.
-
- "I felt very alone," she says. "Basically
I was told there was nothing they could to help me and there were no support
groups because so few people are even aware they have the disease. I would
have periods of feeling better, then times when I would be laid completely
low by the symptoms, as well as depression because of how I felt.
-
- "I couldn't go out, couldn't meet friends or family,
and it is obviously difficult to form relationships when you have to tell
someone that you have this disease. I have been out with one man since
I was diagnosed, but he was a friend who already knew so I didn't have
to broach the subject."
-
- Hepatitis C can be passed through sexual contact, and
there is a small risk of infection from toothbrushes, razors and other
objects which may have blood on them. It is ten times more infectious via
blood-to-blood contact than HIV, although less infectious than the virus
via sexual contact.
-
- Alarmed by the soaring number of cases, the Government
published a strategy on hepatitis C 18 months ago, and promised an action
plan to tackle the epidemic. However, no plan has emerged and doctors have
become frustrated by the lack of progress.
-
- Graham Foster, professor of hepatology at the Royal London
Hospital said: "There is much disappointment in the lack of an action
plan. Absolutely nothing is happening." He added: "The figures
are horrifying. Over the next 10 to 15 years liver disease and cancer rates
will soar. The Government is talking the talk but it is doing nothing else."
-
- Last week, a new drug for people with a chronic form
of hepatitis C was approved by the National Institute for Clinical Excellence,
the body which approves medicines and therapies for use on the NHS. The
drug, peginterferon alfa, is more effective than current treatments, and
has been welcomed by patients and doctors.
-
- And after years of prevaricating, the Government has
finally announced a compensation package for people infected with hepatitis
C through blood transfusions. They will receive £20,000 each, and
those with the advanced form of the disease will get a further £25,000.
-
- More than 1,000 people who contracted hepatitis C from
contaminated blood have already died and thousands more are infected. The
total payout is expected to be £100 million.
-
- While blood is now screened and heat treatment can kill
off the virus, the disease is still being spread, partly because many people
are unaware they are infected and therefore take no precautions with their
partners.
-
- The former Baywatch star Pamela Anderson has hepatitis
C, which she believes was contracted by sharing a tattoo needle with her
ex-husband Tommy Lee. She has spoken openly about having the disease, which
has helped to bring it into the open. But charities are still pushing for
a national awareness campaign in order to get more people tested and treated.
One reason for the lack of action and commitment is that hepatitis C has
previously been regarded as a "low-life" disease mainly affecting
drug users who share needles.
-
- Charles Gore, of the Hepatitis C Trust, said: "We
are going to have to face the consequences of this disease and it is better
to do it sooner rather than later. There are hundreds of thousands of people
out there with hepatitis C who at the moment are undiagnosed and are a
risk to themselves because they are not getting treatment, and a risk to
others because they could infect them. There is also a wider problem of
the huge burden this is going to put on the NHS."
-
- The Government is set to launch a publicity campaign
this year. Meanwhile, Jane Wynn Parry has found ways of living with the
fact that she has an incurable and infectious disease. "I have found
that alternative therapies like acupuncture and Chinese medicine have helped
me a lot," she says. "Spiritual exercises have helped me to focus
on the positive things and to come to terms with the disease. I don't dwell
on what could happen in the future, I just try to stay focused on feeling
well in the present."
-
- © 2004 Independent Digital (UK) Ltd
-
- http://news.independent.co.uk/uk/health/story.jsp?story=486868
|
