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Last Updated: Saturday, 8 January, 2005, 02:12 GMT
'I live in a world of uncertainty'
By Jane Elliott
BBC News Health Reporter

Michael Carter
Antiretrovirals have given Michael a new lease of life

Michael Carter lives in a very uncertain world - that of the HIV patient.

In the past, people like Michael knew they were almost certainly facing a death sentence, but antiretrovirals have changed all this.

Now he knows he could live for years, but equally he could face a premature death from an Aids-related disease.

And it is this changing world that Michael hopes to capture in "Living with HIV", a new book from NAM, the information charity where he works as a patient information officer.


"When I'm feeling optimistic, I can envisage anti-HIV treatment keeping me well and living to a ripe old age. But every time I have my viral load measured, I worry that it may have become detectable again.

"There's also uncertainty about how long my body can tolerate infection with a chronic viral illness like HIV and the potent drugs needed to treat it.

I want to make the most of the fact that HIV treatment means that I'm alive when I expected to be dead.
Michael Carter

"Thanks to the success of treatment, I no longer feel that people should make the allowances for me which they were prepared to make in the past.

"I'm very aware of how hard it's been for my partner and friends at times.

"The problems I'm facing now are less serious, and are more generic - a lot of people have controllable chronic illnesses; a lot of people live with pain, a lot of people are financially insecure.

"I want to make the most of the fact that HIV treatment means that I'm alive when I expected to be dead.

"But I also need to acknowledge that life with HIV medication brings its own set of problems. Like HIV itself, they've become part of my life, and, with varying degrees of success, I've had to find ways of coping with them."


The book gives information on the key issues involved in day-to-day life with HIV, including basic facts on the way HIV attacks the immune system, as well as information on how to cope with illness, hospital visits and death.

And it includes stories from people about their own experiences of living with HIV.

"The last time we did the publication was just before the antiretroviral therapy became available and the book was all about preparing for death, but things have become a lot more complex now.

Pregnancy fear
Matilda found she was HIV positive when she was 16 weeks pregnant
She feared the baby would become infected and was advised not to breastfeed and to have a caesarean
"My little girl is now four-and-a-half years old and she is negative. Thank God for that."

"People are living more or less a normal lifespan, although it does acknowledge in the book that about 400 people a year with HIV do get ill and die.

"The book really does put things in the day-to-day context about what it means to 'me'. It goes from diagnosis to death and everything in between."

He said the changing climate had enabled people like himself to take a fresh look at their lives.

"With treatment has come a redefinition in the way I perceive myself and, I think, the way others look at me.

"I've no doubt that I'll live a longer and healthier life thanks to antiretroviral therapy.

"This means I'm starting to expect things from life - not least enjoyment and fulfilment.

"I'm no longer prepared to accept the day-to-day drudge that accompanied my pre-treatment days with HIV.

"Nor if another drug option exists do I see why I should have to cope with side-effects.

Losing my looks
Edwin almost died in 2001, but survives thanks to an eight drug regime. Drugs left their scars with his face and body drastically thinned and he feared he would stay this way
He had a new procedure called a 'New Fill' and regained the weight
"It gave me back the self-confidence that the lipodystrophy (thinning) had imperceptibly eroded."


"I've become bored of hiding my HIV status - if somebody asks me how I got a housing association flat with a garden in central London I now tell them, 'because I have Aids'. It normally stops any further questioning."

But Michael admits that despite becoming more open, he still has not told his parents about his condition.

Shaun Watson, a clinical nurse specialist in HIV treatment and support at the Nkofi Johnson Centre in the West London Centre for Sexual Health, says the book is invaluable for informing both the newly diagnosed and those who have been HIV positive for some time.

"There is nothing like this on the market. Because HIV is so uncertain you never get information like this.

Nasty shock
Nick was diagnosed in the early 1990s and given AZT
He thought the drugs would protect him, but got tuberculosis
The TB has now been cured, but it made him realise that just how vulnerable he was to infection. "I accepted for the first time that I'd probably have a series of severe illness over the coming years."

"The book is very good for people just diagnosed as a resource if they need it.

"It is a very uncertain future for people with HIV. I speak to people newly diagnosed and they say what is their future.

"You cannot, like with cancer, say you will have this kind of treatment and have this kind of therapy and we will do this and do that.

"With HIV, there could be 20 people with this in the same clinic and all would be being treated differently. There is no certainty with HIV at all - even partners could be on different regimes."

Nick Partridge, chief executive of the Terrence Higgins Trust, said: "This book comes directly from the experience of people living with HIV.

"It pools and shares information, knowledge and insight, which has always been the foundation for taking control of any illness.

"For anyone living with HIV, this guide will be invaluable."

For free copies telephone NAM on 0207 840 0050.


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