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Chapter 5: Living with HIV/AIDS

Hi,my name is Amber, I was diagnosed with HIV 3 years ago on november 3,...I was in this placement center and I started feeling sick but I never thought nothing of it...I went and had a bunch of tests done but all they could tell me was that it was a virus in my blood that could not be detected...I started reading this book about this girl who was diagnosed with HIV and had the symptoms of it and come to find out I had the same one's. So I finely got up the nerve to get tested and 2 days later it came back positive, 2 days before my 15th birthday... I was depressed and gave up on life because I thought my life was over from then on… well I was let go from the placement center 2 days before thanksgiving because I had been hospitalized and they didn’t know how to deal with it, so I went back to my family's and in febuary i took a turn for the worst after several blood transfusions and being in the hospital in febuary I couldn’t breath and I was really sick I went into the emergency room and they kept me and gave me 24 hours to live... So I transfered to the UFM hospital and had surgery and another blood transfution, I was put on a lot of antibiotics and I lost a lot of weight I got down to 70 pounds my hair was falling out, but I got better after being there for 2 months and still to this day I am doing great and living a normal life as everybody else is... http://www.hivaids.webcentral.com.au/text/st144.html
HIV-positive: what if it’s you or someone you know?
Learning you are HIV-positive may feel like a death sentence. And it is true that no cure has yet been found. But a lot of research has been done, treatments have been developed, and people who are HIV-positive today find they can lead a relatively healthy life for years – provided they have access to the right health care and treatment.

(Some links on being HIV-positive:
www.avert.org/positive.htm (Learning you are HIV-positive – coping with and talking about the result. Who should you tell? Can you still have children.)
www.staying-alive.org/en/knowfacts_05.jhtml (Just got your results?)
http://www.youthresource.com (peer educators give advice.))

i. Share the experience of young people who are currently living with HIV/AIDS

Know that you are not alone. You can read many stories on the Internet – some of them very positive and inspiring – of people who live with HIV infection and AIDS. People like Ralina, who tells:

I am a 24 year old female. At the young age of 10 years old, I was being babysat by my best-friend's cousin and ended up getting brutally raped several times that evening. Two years after the rape we were finally able to prosecute the guy and get him incarcerated for a short term of only 3 years. Within 3 months of the start of his incarceration, my mom got a visit from the local health department saying that the guy who raped me tested + for the HIV virus; and that it would be a good idea for me to find out. Well a couple weeks went by and I got the bombshell dropped on me. My test also came back + when I was 12 years old. Because of the lack of knowledge about the virus I ended up getting forced out of high school, because they didn't want it in their community. I have since got my GED and Bookkeeping degree and I was able to pick up and prove everyone wrong. I am a proud mom of a 6 year old NEGATIVE child. Good luck to all!!!!

(http://www.avert.org/ypstory.htm, where you can read many other stories of young people who are HIV-positive)

See also:

http://www.datehookup.com/content-aids-and-hiv-information.htm (Great HIV/AID resources aimed towards youth (basic info, prevention, testing, where to go after a positive diagnosis, support, etc))

http://www.hivaids.webcentral.com.au/ - “HIV/AIDS – Positive stories” (people from all over the world tell how it happened to them, and how they are coping).

ii. What can be done?
You need care, proper treatment and counselling: although no cure has yet been found, being diagnosed HIV-positive does not automatically mean that you’ll immediately get sick and die. Taking care of yourself – both physically and emotionally – following a healthy lifestyle and diet, receiving proper care, finding sympathetic people who can advise you, being aware of the dangers (vulnerability to diseases like TB, pneumonia, cancer…), these are all ways of ensuring that you still lead a quality life.

Treatment:
Though no cure is yet available, a medical treatment called triple-drug therapy – using antiretroviral drugs – is being used today, that has increased HIV-positive people’s life expectancy with up to 20 or 30 years. Know however that this is no magic remedy: it is a very heavy treatment with serious side effects, and people sometimes decide to stop using it after a while because of that. If they do, counsellors can tell them how to continue taking care of their health.

“The goal of anti-HIV treatment is to reduce the amount of HIV in the body. The treatment should stop you from becoming ill for many years. Sometimes the antiretroviral therapy works without any major problems or setbacks, but sometimes there can be problems.”

(read more at http://www.avert.org/conttrt.htm, on what these problems are, how to deal with them, and other options)

A therapeutic vaccine is also available that helps stimulate the immune system if someone stops using antiretroviral treatment.

All of these treatments are however expensive, and not readily available to people with low income or little access to health treatment. This is not only the case in third-world countries. Even in a Western country like France, only about half of the 15,000 HIV-positive people actually receive treatment! (www.sidaction.org - in French). Sadly however, the case in third-world countries is even more tragic: only around 10% of HIV-positive people have access to treatment, and the disease often gets passed on from mother to child. This can be avoided: treatment reduces the risk of mother-to-child transfer to 1%… The cost of providing triple-drug therapy to a person in a third-world country, is 1 euro per day. Generic medicines are now being purchased by governments to be made accessible to people with HIV and AIDS.

Some of the questions you probably ask yourself, are:

• What symptoms will I show if I’m HIV-positive? (At the start, there may not be any… see www.avert.org/symptoms.htm)
• Can I avoid getting AIDS, even if I’m HIV-positive? (www.staying-alive.org/en/knowfacts_05.jhtml: If you’re HIV-positive, proper health care could delay the onset of AIDS – steps to take to protect your health...)
• Can I carry on with my life? (www.thebody.com/quality.html: How to lead a quality life if you’re HIV-positive: complementary, alternative and holistic therapies, the role of diet and nutrition, going back to school, workplace issues, helping and getting help, etc.)
• What alternatives are there to drug therapy? (www.thebody.com/quality.html)

iii.Besides contracting health problems and the AIDS disease itself, one of the most difficult things that HIV-positive people have to deal with is other people’s attitude and prejudice. Disclosure, stigma and discrimination, disregard for human rights, downright fear of “catching” it from an HIV-positive person: these are the unfair issues that add to the suffering. One of the best ways of dealing with this, is to take good care of yourself and communicate with appropriate people (doctors, educators, consultants, etc). Do not feel pressured to open up if you don’t feel comfortable.

If you’re fortunate enough to be HIV-negative, this is also an area where you can help: you can fight stigma and ignorance, so that people with HIV do not get marginalized and treated unfairly. (See www.staying-alive.org/en/take_action.jhtml: “Fight stigma and discrimination – these two are obstacles to HIV/AIDS prevention; get involved in changing public opinion, sign a petition...”)

Ignorance often breeds fear (people are terrified of catching HIV from the infected person) and contempt or even hatred (many still believe today that AIDS only affect “certain people”, like promiscuous individuals or drug addicts, and that they probably “deserved it”.) See the chapter on “How am I at risk?”.

Certain points should be cleared up immediately:
• Should someone with HIV or AIDS be allowed to mix with others at school or at work? (Absolutely: You cannot get HIV just by touching an infected person, shaking hands, sharing cups, swimming together... see www.thebody.com/quality.html)
• Can I do something about it if I’m being discriminated against? (Seek help from someone with authority or legal knowledge. Also read www.youthhiv.org/health/hiv/transmission.cfm on legal cases, discrimination court rulings and workplace issues relating to discrimination on the grounds of HIV/AIDS.)

Imagine:
• you’re HIV-positive: How would you express your feelings, emotions, fears, in words, image or music?
• an HIV-positive person’s dreams for the future


Art, Humour and HIV!

Visit the Visual AIDS Web gallery, a collection of works by HIV-positive artists.
www.thebody.com/arts.html - includes:
- AIDS Arts
- AIDS poetry, fiction and nonfiction
- Dance and music
- Inspiring stories from around the world
- Visual AIDS
- The women of Visual AIDS
- Wit and humour
- World AIDS Day at The Body

Available resources for this topic (some samples):


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 Who am I?
 What is HIV/AIDS?
 Others and me
 How am I at risk?
 Living with HIV/AIDS


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