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A lifeline for HIV-positive people in Orange Farm

June 14th, 2010 by Posted in Countries, English, South Africa

During a recent visit to South Africa, members of Liverpool Football Club visited Oxfam partner Let Us Grow, a centre that provides support to people infected with and affected by HIV and AIDS.

By Nicole Johnston
Regional Media Coordinator Oxfam GB

During their recent trip to South Africa in support of Fair Play for Africa and Oxfam, members of Liverpool Football Club’s community coaching team had the opportunity to visit Let Us Grow. This community-based organisation was founded and is still run by Mama Rose Thamae, who has survived being raped on three separate occasions and as a result is now HIV-positive. Let Us Grow is an Oxfam partner that provides support to survivors of rape and sexual violence as well as to people infected with and affected by HIV and AIDS. The home-based care project is a lifeline for many people who might otherwise die alone or neglected.

Members of the Orange Farm community and founder of Let Us Grow Mama Rose Thamae welcome Mike Yates of the Liverpool FC delegation. Photograph: Neo Ntsoma/Oxfam GB

Members of the Orange Farm community and founder of Let Us Grow Mama Rose Thamae welcome Mike Yates of the Liverpool FC delegation. Photograph: Neo Ntsoma/Oxfam GB

Nobelungu Mzangwa (58) lies in her bedroom in a tiny house in Orange Farm. She is dying in the terminal stage of Aids, her body frail and emaciated while her legs are swollen to twice their size. We visit her with a home-based care team of volunteers from Let Us Grow.

As we arrive, Nobelungu’s elderly mother comes out to greet us, obviously relieved that the volunteers have arrived. “I feel very bad because my child is sick,” says Agnes Mzangwa. “I am happy to see these volunteers because they help to wash her and remember to give her the tablets. As you see I am old, so I can forget to give those tablets every time.”

Nobelungu’s CD4 cell count is at 64 – extremely low, and well below the count of 200 which would make her eligible for antiretroviral drugs. (Healthy people would typically have a CD4 count of about 800). But, as the volunteers explain, Nobelungu also has tuberculosis, so she will only be able to start ARVs when she has completed the TB treatment.

Because their immune system is compromised, people with HIV often suffer from opportunistic infections such as TB, thrush, cryptococcal meningitis and pneumonia.

Nobelungu's mother Agnes Mzangwa (left) with Let Us Grow volunteers Grace Maphutse and Abigail Mooketsi. Photograph: Neo Ntsoma/Oxfam GB

Nobelungu's mother Agnes Mzangwa (left) with Let Us Grow volunteers Grace Maphutse and Abigail Mooketsi. Photograph: Neo Ntsoma/Oxfam GB

Volunteer Abigail Mooketsi takes out her home-based care kit – a small bag containing cotton wool, Savlon, Vaseline, rubber gloves and an adult diaper. They ensure Nobelungu is washed properly and check her for bedsores, but their care extends beyond the physical. “We make sure she doesn’t lie in bed all day, even if she is not feeling well,” explains Mooketsi. “We take her to sit outside and get some fresh air, we sit with her in the lounge and and talk to her and encourage her to watch TV. We tell her ‘don’t give up and don’t sleep all day’.”

The day we visit, Nobelungu is too ill to get out of bed and cries out in pain when Mooketsi tries to tend to her. “On the days she is very ill we just sing to her,” she says, stroking Nobelungu’s forehead. Four days later, I receive a phone call to say that Nobelungu has died.

Derek Dlamini (47) is what the volunteers call “a character”. He isn’t the easiest patient to deal with and gives the volunteers – mostly younger women – a bit of a hard time when he feels they are bossing him around to take his medicine and exercise. They don’t mind, in fact they enjoy the fact that he still has a fighting spirit – it will stand him in good stead in his battle with the disease.

Bill Bygroves and members of the LFC delegation visit Derek Dlamini at his home in Orange Farm. Photograph: Neo Ntsoma/Oxfam GB

Bill Bygroves and members of the LFC delegation visit Derek Dlamini at his home in Orange Farm. Photograph: Neo Ntsoma/Oxfam GB

When we arrive he insists on getting out of bed and “dressing up properly” to see us, despite being obviously ill and weak. “I’m coming alright,” he says as he settles on the sofa. “I am on ARV treatment, so now at least I can eat. But some of those pills are not good, they give me a pain.” ARVs are powerful drugs and can have side-effects but they will save his life – he will, however, have to take them every day for the rest of his life.

People on ARV treatment need to eat healthily and regularly for the medication to be effective. For many people in Orange Farm – where unemployment is around 70% – it is not always possible to get enough food, and the tablets should not be taken on an empty stomach. Dlamini is one of the lucky ones: “My mother is working and she helps to support me.”

While his mother is at work, Dlamini watches TV: “it helps the time go” and he particularly enjoys the soap-opera Days of our Lives. Dlamini is also lucky as he has not faced much stigma or isolation due to his HIV status. “My friends come to visit me, and we sit and talk.”

He is also an ardent football fan who supports local team Kaizer Chiefs, and is really looking forward to the World Cup. He is thrilled to meet Bill Bygroves and Eddie Sullivan of the LFC community coaches squad, and quickly draws them into a conversation about veteran players and historic matches. “Of the overseas teams I like Liverpool,” he says, “they will win the World Cup.”

Volunteer Grace Maputse laughs and tells him Liverpool is not in the World Cup. “They will win,” he insists, and she backs down with a grin, happy to see that his argumentative spirit is still alive. When we leave he insists on walking us outside, proudly wearing an LFC cap that was a gift from the team. As we drive away we can hearing him defiantly chanting “LIVERPOOL, LIVERPOOL, LIVERPOOL!”, as the volunteers roll their eyes.

HOME-BASED CARER ABIGAIL MOOKETSI: ‘HIV IS NOT A DEATH SENTENCE’

“I am 32 years old and I live in Orange Farm. I was born in Mafikeng, but I came to Orange Farm to live with my auntie. I was diagnosed with HIV in 2003. By 2004 I started to be weak and to be sick and I had TB. I got treatment for six months from the clinic so I got better and then caregivers visited me from Let Us Grow. They helped me to be strong and brought me to the support group. Later I became a carer, working with people who have HIV and Aids like me. In 2006 I started on ARVs and that made me very, very strong.

I feel good about being a carer because most of my patients were very weak when I met them and now some of them are better and have even gone back to work. When I work with them I always tell them about my own HIV status and where I come from. Some of the people get stressed when you tell them about HIV, they are afraid because they don’t have enough information.

I am very angry about Nobelungu, the lady who died this week. I always told her that HIV is not a death sentence. She passed away in my hands. I took her to the doctor and he tried to help but said she was too sick and must go to hospital because she needed to be put on a drip. We called an ambulance but it came late and by the time it arrived, she had left us. She was late to start on ARVs because she had to first finish three months of TB treatment. You can’t take TB treatment and ARVs at the same time, you have to finish TB treatment first.

We only started seeing her at the beginning of this year, after her mother called us in. The problem is that she tested for HIV too late and was very sick by the time she was diagnosed. If she had tested earlier, she would still be alive. If I had known her earlier, I could have helped her to get ARVs like me.

The problem in this area is that some people are still ignorant about HIV. When I try talk to them and I tell them I am HIV-positive, they say ‘but you are so fat’. They think that someone who has HIV must be slender. But I tell them HIV does not write its name on your face – you cannot tell just by looking at people.

Some women become infected because there is a lack of jobs, so they sell sex just because they need to bring food into the house. Men give them more money if they have sex without a condom, so they get infected. There is also a lot of rape and violence against women so that also drives the infection rate. It is especially a problem among the youth.

If I could go back in time I would change things so I didn’t get infected. Now I have changed my behaviour and I stick to one partner. I tell everyone the same thing – ‘stick to one partner, because HIV is here!’”

S’CELO HLATSHWAYO AND SIMPHIWE NZAMA PUT THE FOCUS ON MEN’S ATTITUDES AND BEHAVIOUR

S'celo Hlatshwayo


S’celo: “I work here at Let Us Grow, where we have a programme called ‘Men’s Calabash’ with a group called Sonke Gender Justice. The programme is about addressing gender relations, human rights and HIV. We focus on men’s attitudes and behaviour. We have meetings with men, where we sit and talk openly about things like relationships and how they as men treat their girlfriend or their mother, and how they treat their peers. We look at the high rate of women abuse and sexual violation. Some men see women as their slaves, or believe that if they have paid lobola (bride price) then they own that woman, and it’s all his way or the highway.

“At these meetings we talk with them and they tell us why they do this. We use the meetings as a platform to educate them and bring light to them. It’s important to work with men, because traditionally workshops and trainings were aimed at women. But even if you empower a woman she’s going to go home to a man who has the same old attitudes, so we need to bring both partners on board.”

Simphiwe Nzama


Simphiwe: “The link between HIV and partriarchy is that women abide by cultural norms, so they won’t propose things like using condoms or argue against polygamy, which is actually a driver of HIV.”

S’celo: “The high rate of HIV is because of women being abused, and raped, and being forced by their partners to have sex without a condom. There is a lot of rape in this area, Ward 1, especially committed by young men between 18 and 27. Lots of them are involved in gangsterism and crime. I’d say the rape rate in this area is about 40 to 50%.

“The HIV infection here is also mostly among young people, from about 15 to 29. Last time I checked the HIV infection rate here was about 65%.”

Simphiwe: “As young men doing this work, we do come under a lot of pressure because other guys says we are sissies, because we are not doing the things they do. I continue with this work because I want to see a change.”

S’celo: “Once you start knowing what you are doing, then you understand who you are. What keeps me going is that I want to see guys making a difference. This work changes you. Before, I used to be quite aggressive, now I am very soft. Now I don’t act impulsively, I analyse things and take things easy. When I am with my peers, the way I speak and act is important and even if I only influence one or two to change, that’s OK because that is how we make progress.”

Simphiwe: “Yes, that is the only way we will beat HIV and gender violence: ‘Each one, teach one. Each one, reach one.’”

ORANGE FARM: FACTS AND FIGURES

  • Nearly 70 % of the inhabitants of Orange Farm live well below the poverty datum line;
  • It is the biggest and most populous informal settlement in the country, home to approximately 400 000 people – mostly living in shacks;
  • Orange Farm is 40 km from Johannesburg, and those residents who are in formal employment spend much of their income on public transport to the city;
  • Let Us Grow estimates that there is a 40% HIV infection rate in Orange Farm, and there are very high levels of violence against women;
  • The area also has one of the highest matric (school leaving) pass rates in the country.
    1. One Response to “A lifeline for HIV-positive people in Orange Farm”

    2. By mokgethi on Aug 10, 2011

      Let Us Grow is a very good organisation and talking from experience I have been there before to research a school project and got a very warm welcome. Keep it up Let Us Grow and keep on making a difference to the community.

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