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Last Updated: Monday, 24 November, 2003, 11:03 GMT
HIV and Aids: Send your stories
Nurse feeding HIV baby

Are you one of the faces behind the HIV statistics?

From shock and grief to peace and intimacy, every one of the 42 million people worldwide living with HIV has a unique set of experiences.

And the virus has touched millions more as family, friends and health professionals confront an infection which, untreated, slowly kills.

We want to hear how HIV and Aids have affected you and your community. What have you lost - what have you gained? What concerns you most?

Perhaps you have waited for HIV test results, or had to break the news to someone else. You may have seen stigma, rejection and discrimination first hand - or been brought face to face with your own prejudices.

Tell us how HIV and Aids have affected you.

Use the form on the right to send us your story. Please include your phone number if you'd like to participate in an interactive forum or Talking Point programme on HIV/Aids. Your number will not be published.


All of the girls do not know the boys are infected
Dereje, Addis Ababa

I am a journalist in Ethiopia. Two years ago I was conducting interviews in the town called Nazareth 90km away from Addis Ababa. An HIV positive young man, campaigning against the pandemic, told me that three of his friends who knew they were living with the virus, are hunting school girls. They have sexual relations with many young girls with out condoms. All of the girls do not know the boys are infected. The man recently told me that the boys had disappeared and moved to an unknown place, probably still infecting other girls. One can imagine how many innocent girls are infected in the last two years and for many coming years.
Dereje, Addis Ababa, Ethiopia

For some years I have suspected my sister of having HIV. Recently I confirmed this. I think I am the only one in the family that knows this. She is on ARVs. It has been very devastating. I have spent the year so stressed my doctors are worried for me. I have not discussed this with anyone.
Herman, Kampala

I was first diagnosed HIV in Nantes where I was staying with friends, way back in 1985. I tested positive again 5 years later. But I count myself lucky. I don't have to take any medication and the blood tests I take every three months show no alarming signs of the disease.

But, yes, I have lost friends. But I have very few reasons to complain. Casual sex has always been part of my life. Some of my former acquaintances accused me of voluntarily spreading the virus because they said I was feeling angry and resentful. This really hurt me as it's completely wrong. I feel it never entered my heart or my mind to spread the virus around. Perhaps it is just recklessness. But I know in my heart that I never had such malevolent drives.
Christophe Naud, Thonon Les Bains, France

Then they told the pregnant lady that she was infected with Aids and her baby too, she started to scream
Iliana, Veracruz

My mother was in the hospital for an operation and saw an awful scene: a pregnant lady was there in the ward too. She was going to have a caesarean. Doctors wanted to do a blood test just to be sure that she was ok, the lady looked happy and her husband was taking pictures and the family outside were exited about the new baby.

But one hour later the doctor came with a serious face and talked to the husband, he became pale and started to cry. Then they told the pregnant lady that she was infected with Aids and her baby too, she started to scream.

I cannot tell you anymore, you can imagine the rest. It was so sad, my mom started to cry, everyone in the ward did too.
Iliana, Veracruz, Mexico

I am fortunate enough to say that I am not living with HIV/Aids. HIV/Aids is all around me; friends, relatives, neighbours. Everyone, it seems is dying. As a 30-year-old mother, returning to my country, Kenya, I saw first hand what HIV/Aids was doing.

It was shocking at first, then scary. Then, my emotions turned to anger. How had HIV/Aids got so out of control - killing thousands daily while the rest of the world seemingly looks the other way? And the children. There are orphaned children all over; children just like mine, but who will probably never have the same opportunities without outside intervention.

I decided to so something about it and started a charitable organization, Twana Twitu (which means "our children" in my language) and with the support of others, am helping educate and support Aids orphans in my village. To do any less, would be immoral.
Mwende Mwinzi-Edozie, Kenya

20 years ago HIV dramatically changed my life. As a TV journalist, I witnessed the appalling discrimination aimed at the first Australian child to be HIV infected via a blood transfusion - Eve van Grafhorst of New South Wales. But she confounded everyone with her bravery and courage from the moment she was turned out of her pre-school because of the hysteria and stigma that engulfed her.

She sold her hugs at fifty cents a piece to raise money for the cause even though her family was basically hounded out of Australia and had to start a fresh life in New Zealand where she died in 1993 as an 11 year old.

It was her example that inspired me to found an Aids charity - The Australian Aids Fund.
Brian Haill, Melbourne, Australia

I had sex with a prostitute in Amsterdam about three months ago. It was a stag party and I was enjoying myself. Whilst I used a condom with the lady, there was contact without the condom.

When I returned to England, I was convinced I had contracted a STD, so I booked an appointment at the health clinic. At the same time, I just started to date this lovely girl.

Anyway, went to the clinic and all was ok - but I still had to take the HIV test. It has caused me two months of concern. Sometimes I forgot about it but it was always at the back of my mind - what if?

As the day approached, I was more and more nervous. I couldn't cope with the waiting. The day came and I was negative. The sense of relief was amazing but I never want to forget what I had to go through and it's made me have a whole new perspective on those living with HIV.

A simple clear message - use condoms and when a relationship progresses to a stage when condoms aren't used get checked first.
HK, England

Watching your sisters slowly dying in your care physically affects your way of thinking towards HIV/Aids
Beatrice Chatuwa, Malawi

Watching your sisters slowly dying in your care physically affects your way of thinking towards HIV/Aids and my advice is take care of yourself and trust in Jesus.
Beatrice Chatuwa, Malawi

I am gay and HIV positive; I was diagnosed in 1998 after being raped. I started on drugs shortly after, but stopped them when my mum died two years ago. Since then I have been fortunate enough to be healthy with a low viral load and a good CD4 count. I am lucky; I have good care and support of my friends and family. My heart goes out to the millions in the world who are affected, not just those who are HIV, but those that care for or look after someone with HIV or Aids.

In the UK we are lucky to have the support we have from the health authority. Now all we need to do is educate the rest of the population.

The old adverts don't work any more, why is our government not doing more to disseminate the rumours that still exist about HIV?
Ian, Manchester

The medication only gives you the mean to survive
Roger Smith, Pittsburgh

As someone who himself is HIV positive, I find it ironic that there is so much focus on the medication as a cure-all for HIV. The medication only gives you the mean to survive. What the world needs is a cure and/or a vaccine.

The harsh reality is that our best efforts haven't been enough, and our prevention efforts today are minor reflections of the strong prevention efforts of the late 80s and early 90s.

We must properly fund research, because without it, all of our fighting is most likely going to be in vain. We can do our best to hold off this disease with our current antivirals, but without eradication, viral evolution will eventually render all antivirals useless.

Withstanding the side effects of the medication is easier said than done. The side effects can be severely debilitating and even fatal.

It's time to see the big picture and act now, instead of waiting until we're in a dire situation to realize what needs to be done.

Lastly, President Bush needs to acknowledge that contagious chronic diseases are a serious concern to national security and fund them properly. $15 billion is only a starting point as far as I'm concerned.
Roger Smith, Pittsburgh, PA

When I was living in Malawi in the late 1990s I lost a dear friend to Aids. A man of great initiative and enterprise, having worked as a tour guide in his teens to pay his way through a good secondary school, he later ran many sound business ventures, employing local people. My friend was the mainstay of his extended family - the one to whom even the distant relatives looked for help in times of financial hardship. Although he was he was brought up a Catholic, he became a convert to Islam, and truly embraced the Islamic tradition of giving to those less fortunate.

When he started to get sick he withdrew somewhat and over time it became obvious that he was terrified of the future. We talked about him getting an HIV test and he said he would consider it. The reality was that the knowledge would be too devastating to live with. There was no pre-counselling available and no antiretroviral medication. The future was indeed bleak and after months of poor health and anguish, he died a wasted man - barely a shadow of his former self and a tragic waste of a valuable life. His death is the closest I have come to the inequalities between the developed and developing world. Much has still to be done.
Louise, Bristol UK

I don't have HIV, but I have visited townships around Cape Town where HIV infection is in epidemic proportions. I spoke to people there about the continuing debate, about Thabo Mbeki's denial of the relationship between HIV and Aids, about the continued wrangling to enable generic drugs to be provided to ease the humanitarian crisis and the opposition of drugs companies. What struck me was the dignity of these people, knowing this dreadful disease will kill them but bearing no ill will against the society that prevents them obtaining the best medical treatment. Would that these people could speak with one voice to tell the governments and corporate world that human life is more important than profit or prejudice.
Andy Millward, UK

Sadly however, no one in my daily life knows anything of my plight due to fear of reprisals and rejection
Anna, Spain

11 years ago my husband and I were diagnosed HIV positive in Spain. I was 32 years old, in my prime of life and was devastated. I don't think I will ever be able to express how truly devastated I was.

My greatest sorrow must be that 11 years on millions more people are infected worldwide and will have felt that same devastation and so little has been done to prevent it. While countries go to war to fight terrorism, governments blindly ignore the biggest terrorist threat on earth today, which is clearly HIV/Aids.

Thanks to living in Europe I am able to tell my tale as I have been able to benefit from drug therapy (not without its drawbacks) and enjoy a relatively normal life. Sadly however, no one in my daily life knows anything of my plight due to fear of reprisals and rejection - we have enough to worry about without compromising ourselves.

From my secret little corner I would like to thank from the bottom of my heart, all the people who relentlessly work to raise HIV/Aids awareness and help those who are affected. Your work is invaluable.
Anna, Spain

Due to the horrendous price of health care and medications, I was forced to liquidate all of my assets
Steve, USA

I am a 43 year old gay male and have lived with HIV for 10 years. I am highly educated with a master's degree. I was infected through a former long term partner.

Due to my illness, I have had to stop working as I tend to become ill frequently. I have a 22 year old son whom I have raised. He has a 5 year old son. They both live with me. Since I stopped working, my grandson is now my full time job. He is the only thing that keeps me going. I am very active with his school activities, and at times when I'm not feeling well, his Dad takes over.

I didn't ask to be sick; I had a very prestigious, lucrative career, a 12 room home and two cars. I also owned beach front property in Rhode Island. When I became ill, due to the horrendous price of health care and medications, I was forced to liquidate all of my assets. Everything that I worked so long and hard for, gone due to the high cost of health care.

If it wasn't for my son and grandson, I wouldn't be able to go forward on a daily basis. I have a large group of friends who are very supportive and active in my life. I am happy and content with my life although I do miss my career.

I do get depressed at times when my grandson talks about when he grows up and has kids of his own that he wants me to baby sit for them like I do for him. He's too young to realize that I won't be around to see them. That makes me sad and angry. But I do try to stay positive that one day soon, we all shall see a cure and end to this devastating disease.
Steve, CT, USA

I was diagnosed in February 1996 along with my then partner. Due to a poor prognosis in the early stages of my infection (i.e. a high viral load and a low CD4 count), I was told that I should start treatment in March 1997. I asked my consultant what would happen if I declined, his answer was blunt, I would be seriously ill within two years and dead within five years.

After screening for a drug trial in April 1997 I started triple combination therapy in May 1997. And here I am today, nearly eight years after diagnosis, still alive, my CD4 count is steady, my viral load is undetectable and I have a healthy HIV negative partner who loves me dearly. I have encountered prejudice, I once told someone my status in a bar over a drink, he got up and walked out without a word, his loss! I am living with this disease, I am not dying from it, if people ask me my status I never baulk from telling them that I am positive. My message to all is to have hope, one day I believe that we see an end to all this, the Quilt can be folded up and stored away safely and (hopefully) mankind will have learned a lesson in tolerance, understanding and loving our fellow human beings.
Alan, Birmingham, UK

Being a mother you think you can make everything ok
Jacqueline Heather Rehumäki, Finland

I am an English women living in Finland. I lost my son to Aids nearly 8 years ago, he was 25 years young. In 1993 he went to London for an Aids test. Paddington hospital, Jason called, horror in his voice, "I'm HIV positive" he said. Of course being a mother you think you can make everything ok. This time I could not, although during the next 18 months God knows I tried. I can only give praise to "The St Mungo Trust" for all their support. Outside of that circle is fear and loathing. Back home the doctor who was treating Jason told, "these people must go to ------ The nurses were not tolerant.

Finally having no control over his bowels, laying there almost blind covered in lesions, looking so thin and weak they rendered him totally unconscious. I tried desperately to take Jason home to die, but no-one was listening to our wishes. When Jason died I had his body taken back to our home town in England. The coffin draped with the gay flag, a statement "I am gay, I did not ask to be gay, but I am proud of who I am." It doesn't matter what colour or creed or sexual orientation you are in this life.
Jacqueline Heather Rehumäki, Vantaa, Finland

I have been affected by this epidemic.
I have lost brothers and sisters, close and distant relatives, very close and important friends, workmates and many whose acquiescence I was blessed to have in life.
Living in a circumstance affected and "controlled" by the syndrome, has brought about a very different dimension to which life is viewed, lived and celebrated.
In our third world life, where poverty and hardship is so normal it almost becomes invisible, never has any phenomena come so close - in the face - as has HIV/Aids.
Apart from wars and other major catastrophes, no greater event occurs close to human hearts, in people's homes, grips their very lives like this syndrome.
For the first time have children in a time of normality and relative peace, seen their brothers and sisters, mothers and fathers, slowly, painfully, and hopelessly, (helplessly) wither out and die.
After such knowledge, what forgiveness? Will these children live, lead normal lives, and grow up to perceive the world, as happy and beautiful place it should be?
Tamanda, Lilongwe, Malawi

I've just been evicted from the house I was renting
Richard, London

To illustrate that prejudice and misconceptions about Aids/HIV are still widespread I'd like to tell you my story. I've just been evicted from the house I was renting. I am gay and told the other tenants in the house this when I moved in, only to avoid there being any future problems if they later found out. One of the other tenants claims to have become "terrified of catching Aids" due to my presence in the house and the fact that he was sharing a kitchen and bathroom with me. Subsequently he moved out, informed the landlady and I was given a months notice to leave the property. I am not HIV positive, have always practised safe sex, have only had sex with my partner for the last year and a year ago took an HIV test just to be on the safe side.
Richard, London

I have Aids. And I know the feelings of frustration with this disease. I also have many theories on why this disease has gotten out of control. The problem underlies with poverty. Many people, mostly in places such as Africa are poor, so unprotected and irresponsible sex is the only form of recreation. Simply put, condoms should be free and mass distributed around the world and abstinence should be taught to the younger generations. Aids can be beat, but not without the cost of human life. As an Aids survivor, I have hope.
Nathan Graf, Flagstaff, Arizona, USA

For some people Aids is all about numbers, for me it is about my sister
Scariot Banda, Lusaka, Zambia
I have already lost two sisters to Aids, four brothers-in law. Three of my other sisters are infected, so is my young brother. I realise that for some people Aids is all about numbers, for me it is about my sister who is really struggling with various illnesses at the same time. It hurts me because each new day brings about something different. But she is a fighter and is stronger at times or is it most of the times than me. I thank God for her that each new day I get to spend with her I really value the time considering that I lost out on my immediate elder sister, so I will make the most with my young sister. Who knows - with her attitude she might just outlive me
Scariot Banda, Lusaka, Zambia

I was diagnosed with HIV in January 1991 at the age of twenty five. Twelve years later I am more surprised than anyone to still be here, let alone healthy and working full time. In those twelve years I have lost my partner and both parents to cancer. I was always expected to die first: it puts living with HIV in perspective. I'm lucky that I am on drugs which are working for me with minimal side effects. That is as much luck as medical judgement or my careful adherence to taking the right tablets at the right time, every day. Now I have a new partner, a lovely home, good neighbours and wonderful friends. I am the living exception to rule. Rather than asking "why am I still here" I keep trying to wish my luck on everyone else affected by HIV and Aids.
Jon, England

I am a volunteer for The Food Chain the only AIDS nutrition charity in the UK. Along with 600 other Londoners many of whom are themselves living with the virus I help prepare, cook and deliver meals for 450 other Londoners who are housebound with AIDS related illness. We do this with no government funding, from borrowed kitchens and in 15 years we have never missed a week. Amazingly we are about to send out our 1/4 millionth meal.
Liza, London, UK




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