Having a Life is a resource developed by the AFAO/ NAPWA Education Team in which HIV + people describe the experience of living with HIV / AIDS. Follow the links below to read positive people's stories about identity, disclosure, making babies, and more, or add your own story.
Having a Life takes an innovative peer approach to describing the experience of living with HIV/AIDS in the era of HAART*. The inclusion of powerful and moving stories from positive people about the way they survive - and sometimes thrive - with HIV in their daily lives gives this resource a real value for HIV positive readers and their friends and families.
The book will be of particular value for those people who have been newly diagnosed with HIV and who wonder about what the experience of taking treatments will be like, how others will react to their diagnosis, how best to tell their family, friends, workmates or sexual partners. There are not always definite ways to approach all the aspects of living with HIV and each person will need to discover the best way forward for them in their own way and time. This resource gives some helpful insights into how to go about it, pointing out potential obstacles and ways around them.
This is also illuminating reading for those of us who have already lived with HIV for some time. I found it inspiring the way the way some positive people have assimilated HIV into their lives and how they have used their new-found health from improved treatments to find new directions in life. I recommend it to all my positive peers and their friends.
David Menadue
President,National Association of People living With HIV/AIDS (NAPWA)
Adherence Often shorthand for ‘strict adherence to therapy’, meaning pills are taken exactly as prescribed: on time, every time, and observing any specific dietary requirements. Also referred to as ‘compliance’; less frequently, as ‘concordance’.
Antiretroviral A more complex term for antiviral drugs, in this case, any drugs that are designed to inhibit the process by which HIV replicates. Sometimes, the simpler term antiviral is used, and it is assumed that the virus in question is HIV. The more technical term antiretroviral refers to the fact that HIV is a retrovirus.
Bareback (also: Barebacking) A controversial term referring to the practice of unprotected anal intercourse.
CD4 cells (also: T-cells or T-helper cells) A type of blood cell involved in protecting the body against viral, fungal and protozoal infections. CD4 cells are part of the human immune response. If HIV is inside the human body, it targets and replicates within, CD4 cells, destroying them in the process. The cells are so named because they have a particular marker, known as a CD4 receptor, on their surface. CD4 cells are sometimes called the ‘conductors’ of the immune system, since they orchestrate the responses of other cells.
Clinical trials (also: trials) Studies which test experimental medicines in humans, in order to establish that they are safe and effective. Clinical trials are staged in ‘phases’, beginning with small numbers of people, then being tested more widely as data on safety and efficacy is established.
Compliance See adherence
Drug holiday Refers to “breaks” from antiviral therapy. Should be distinguished from structured interruptions to therapy under medical conditions.
HAART Highly active antiretroviral therapy. Usually means a combination of at least three HIV antivirals from at least two of the three classes of anti-HIV drugs available: Nucleoside and nucleotide analogues, non-nucleoside reverse transcriptase inhibitors and protease inhibitors.
Lipodystrophy Any disturbance in the normal distribution or metabolism of fat throughout the body. May be associated with the use of antiviral therapy including protease inhibitors. Fat deposits tend to be located on the stomach or upper back. The related term ‘lipoatrophy’ refers to the loss of body fat from the face and extremities (legs and arms).
Regimen A prescribed, systematic form of treatment for curing disease or advancing health.
Resistance The ability of a micro-organism like HIV to escape the control of the drugs used to fight it. In terms of HIV, this happens when the virus mutates during the replication process. Viruses like HIV, which have their genetic material encoded in RNA, lack critical genetic ‘proofreading’ mechanisms. So when new copies of HIV are created, often, minute errors in the genetic translation will occur. Over time, HIV may develop small changes to its structure which mean that anti-HIV drugs, which are designed to interfere with the virus in quite specific ways, will not be able to control it.
Resistance test A test which looks at the genetic structure of HIV, to determine if any mutations in the virus would make it likely to be resistant to particular antiviral drugs. Sometimes referred to as resistance assays.
Sero–discordant A term referring to a relationship or sexual partnership where one person is HIV positive and the other person in HIV negative.
Viral load The amount of virus present per cubic millilitre of blood. This is measured by a viral load test.
Undetectable viral load Tests currently licensed in Australia can reliably detect and quantify virus particles if there are greater than 50 per millilitre of blood. An undetectable viral load result does not mean that there is not virus present, or that replication is not occurring. It means HIV is there in levels too low to accurately measure .
Some of the terms and explanations used in this glossary have been supplied courtesy of Positive Living
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