A new start perhaps - Nell

Hi, I’m Nell. I’m very new to all this, so it’s a little intimidating, but also exciting. I’m hoping the perspective of a newbie will work quite well for people looking to this blog for information, let me know!

What I look like

I was introduced to HIVEX through Anna, and looking at the testimonials she had and hearing the stories she told, it was very hard to believe I hadn’t heard of this. That practically no one other than those directly involved has. It feels now like I’m wasting every minute not shouting it from the rooftops (this blog is my compromise, maybe one day I’ll be braver and follow Leaflet’s example.)


Norwich Cathedral

A little background: I'm 20 years old, I've spent most of my life living in Norwich, a small, somewhat remote city to the North East of London. The main problem young people in Norwich and the rest of the UK face at the moment is that there aren't enough jobs, and those without jobs lack money, ways to occupy their time, and long term unemployment makes it more difficult to find work in the future. But here, when we have no jobs, we still eat, and have somewhere to live, and adequate healthcare, generally. I did have a job, and I didn't hesitate when I had the chance to do something that I knew would be making a positive difference to people's lives. I've been struggling with knowing what I want to do with my life and no matter how long my work with HIVEX lasts I know it will have helped something that I think is very important. I've never been to Africa and I haven't seen what HIV can do to communities, except on TV. But when confronted with the reality of the ways HIV is affecting the world and the potential for change HIVEX represents, knowing I had an opportunity to help, there didn't seem to be any reason to say no.

Everybody working on HIVEX is doing so because they care. We don't have the funding to pay anyone a salary. I think one reason individuals from western society can be reluctant to engage with charity is that it can be overwhelming. When I really start thinking about it, it can feel impossible to justify having anything beyond food and a roof over my head when there are so many people who don’t have even basic necessities. It seems many ways of donating to charity, such as charity wristbands, monthly standing orders, enable us to give whilst still keeping the reality at a distance. In the past, it’s easier for my brain to deal with just not thinking about it and not contributing anything rather than feeling like I’m helping, but having to mentally confront the issue.

It’s problematic, to say the least. The difference with HIVEX is, that while HIV rates are still overwhelming, I know what given the right opportunities we can affect meaningful change. There isn't the same sense of powerlessness. For me, this is one of the reasons HIVEX is so incredible, and frustrating at the moment. Anything I do to aid people being treated I know is helping in a definite and very immediate way. But of course everyone involved knows if we just had money or approval then we could be doing so much more. Thinking in terms of the number of people treated, versus the number of HIV positive people – in 2009 an estimated 5.6 million people in South Africa alone – it can feel like HIVEX has barely made any difference at all. The important thing is to focus on the people that we have helped, ways we can use their experience to help others, and what we can do in the future. I'm reminded of the story of the little boy (or girl depending on the variation) throwing starfish back into the sea. There are hundreds washed up on the shore and an onlooker remarks there are too many for him to ever be able to throw back, that he'll never make a difference,. The little boy keeps on throwing and replies “I made a difference to that one.”

Anna has told you about Leaflet, who was treated and now volunteers at the treatment centre in Durban. Leaflet works with the people who have come for treatment and has told me the stories of two men.


Fishing on the Umhlanga rocks

Skhumbuzo is a young man from Umhlanga, a wealthy suburb of Durban, he has been HIV positive for several years. Despite the huge stigma around HIV in South Africa he’s engaged to be married, and his fiancé is the one who brought him in for treatment. This is a traditional Zulu engagement negotiated between the two families with a dowry, “lobola” to be paid.

http://en.wikipedia.org/wiki/Lobolo It is a family matter. Lobola will go to the wife's family. Depending on who they are, this could be cattle, or take the form of a washings machines and money. In any event, it will be substantial, and part of the contract is that the wife must be a virgin. But not the husband. That is not expected of Zulu men, and this young man has contracted HIV from a previous sexual partner. As is very common in those with weakened immune systems, the patient has been suffering from TB. He had been treated successfully for 4 months when he was accidentally given the wrong medication. The side effects of this included painful sores around his mouth and ulcers in his stomach which prevented him from being able to eat. When he came in for treatment he was very thin and unable to walk without assistance. After less than a week of treatment the sores are healing, he’s eating porridge (Pap), attempting more solid food, and beginning to walk. Though slowly, Leaflet was quick to qualify.

Patient X is a man who was in treatment at the same time as Leaflet. He had been using antiretrovirals but was still suffering. The skin on his leg was infected, Leaflet described the flesh at ‘rotten’, ‘black’ and ‘falling off’. He had been seen by doctors and they were considering amputation. He was a work colleague of Leaflet, and while she was unsure of the positive effects of the treatment on her, (she had undiagnosed and untreated TB) he could see that change in her, and demanded to accompany her after she had been treated for just a few days. Now, months on, his leg has completely dried up, with no complications, and he can now wear shoes!

In my most recent conversation with Leaflet she gave me the numbers of several HIVEX patients, some still in treatment and some who have completed it, who wanted their stories told. Muzi is the first person I've spoken to directly, he's completed his treatment. Hearing him talk about his experiences was extraordinary and I found my eyes welling up speaking to Anna about it afterwards. He sounded so happy, it's clear he feels the treatment has changed his life. In his own words:

“My name is Muzi, HIVEX helped me a lot. I was very very weak, Now I am strong, very very strong. You cannot believe it. This place is amazing, amazing. I was very very very very weak, but when I got treated, 2 days then I felt strong. After I got full treatment I was still strong. You cannot believe. It helped me a lot. I finished treatment [recently], I can still feel my body working, as if something is inside me. My immune system is still working. I had a runny stomach, but it stopped [after 2 days] , [I had] no appetite. I am a MAN now. I can do anything now. I know. I am happy after treatment. I live in Port Shepstone, I want a machine there too."

 

The Port Shepstone coast

Personally, connecting individual stories with the work that we're doing really makes it real in a way that numbers can't. I'm hoping that I will be able to continue having conversations with Leaflet and tell you the stories of more patients as we continue the treatment in Durban. The HIVEX treatment is certified as 'safe', but it has no official medical status,. When I started telling my friends and family about HIVEX and the problems it was facing I was met with a barrage of suggestions of people I should contact: Oprah Winfrey, Bill Gates, the Clintons, the man who writes the 'Bad Science' column in the Guardian. And I know people have tried. And it is hard when studies are so old (2003), and there aren't publications, and when treatment had stopped. Now, with around 850 people treated in the last year, things could be different. Whoever reading this isn't going to be Oprah (unless you are, in which case, hi) but you're interested and I think you should know.

There is now a South African charity, formed by supporters of HIVEX called 'Africa learns SA', it is designed to help people with the cost of treatment.

NPO no: 073-136

First National Bank Ltd

Durban North
Account no: 62327136546
Branch code: 220426

Telephone numbers:
Leaflet: +27 730931662
Mabel +27 781818297