Living with Aids

LIVING WITH AIDS

"My name is Nomfumaneko Yako. I am fifteen years old. I started to be sick in May last year."

NOMFUMANEKO CONTINUES...

It was said I must have an HIV test. It was positive. My heart was very painful at the news, but I did not cry. The nurses told me I must not be scared and that if I take my medication, I am going to get better.

For a while I felt stronger, but now I cannot do anything. I am very weak. It is difficult for me to walk even a few steps. My sister helps me to wash. My family is supporting me. They come to sit with me every time I take my medication. I feel very happy because they show me that they really love me.

I want to go back to school when I am better, so I can learn to be a nurse. My dream is to help other people who are very sick in the same way.

Last November Nomfumaneko died.

Her Aunt Ntobile Nkosi:

It was very bad for us because we had hoped that she was going to live long after she was given the new pills. When I am alone, I just think of her. I remember she was a beautiful child, and I also remember when she was so sick and had so much pain, here at my house.

Across sub-Saharan Africa the HIV/AIDS statistics are terrifying: more than 26 million people living with the virus, 2.3 million deaths a year from AIDS-related illnesses. For 12 years I've documented the effects of the disease on individual Africans, their families and communities. Over time it's become clear to me that my photographs alone can't convey the human reality of the pandemic. These days I travel with both a camera and a recorder so people can tell me in their own words how HIV/AIDS has changed their lives.

The South Africans telling their stories in these pages are from Lusikisiki, a rural region in the Eastern Cape Province, where huts cradle in the creases of green hills. Poverty has always plagued the area, and now the pandemic has further complicated survival. Yet in some ways the sufferers here are more fortunate than most Africans grappling with the disease. In the past two years nearly 800 people in Lusikisiki have been treated with antiretroviral (ARV) drugs. The drugs are administered by Siyaphila La, "we are living here," a joint project of the Nelson Mandela Foundation, Médecins Sans Frontières (Doctors Without Borders) South Africa, and the local health department.

Siyaphila La is proving wrong the widely held idea that the three-pill drug therapy used by millions of Westerners but only 11 percent of Africans with AIDS is too expensive and too complicated to administer in poor African communities. The project relies on nurses in clinics rather than on doctors in hospitals, on inexpensive generic ARV drugs, and on the commitment of patients and families to the daily treatment regimen. Siyaphila La is also challenging the social stigma associated with HIV/AIDS by changing perceptions. Instead of dreading the disease as a killer--something to be denied rather than faced--the people of Lusikisiki now see it as a manageable chronic illness. Patients, as well as their families, medical staff, and others in the community, wear T-shirts with an HIV-positive logo. The openness with which people here confront their condition has given them a strength and bravery I find humbling.

The word Lusikisiki is meant to mimic the sound of wind rustling reeds. Perhaps that wind will soon be heard throughout the continent.

MY NAME IS NOZAMILE NDARAH. I am 22 years old, and I have four children. Last year I decided to get an HIV test because I had back pains, headaches, and diarrhea. When they told me I was HIV-positive, I was very sad. If I die, I thought, who is going to care for my children?

I phoned my husband, who works at a gold mine, to tell him this news. He then told me he was HIV-positive as well and was already getting ARV treatment from the mine hospital. I was very angry and asked him why he came home with such a big disease when I had small children to bring up. He said he was afraid to tell me that he had this disease.

I decided that I wanted to have all my children tested for HIV. The AIDS counselor took a drop of blood from their fingers and put it on a small cardboard strip. Then we had to wait 15 minutes to see how many lines appeared. Two lines means HIV-positive, but all my children had only one line. They will be able to lead healthy lives.

I have started to attend the support group at Xurana Clinic, and I like going. Every time we open with a prayer and sing many songs. I was also part of a big church service in my village, where I was called forward for a special blessing. I was happy to receive such a blessing in front of so many people.

I have been taking ARV pills for two months now, and I am free in my heart. I can take care of my children, clean my house, look after the goats, fetch the water, cook the food. I have decided to tell everybody that I have HIV. I want to live a better life, so I don't want to be hiding something like this.

MY NAME IS ZAMOKUHLE MDINGWE. I am seven years old. My mother died last year, and I was very sad. She had AIDS, and I got it from her because she didn't know she had AIDS and she breast-fed me. Now I stay with my grandparents and cousins. They take care of me.

Every morning when I wake up, I take my pills. I have been taking them for some time now, and I feel stronger. I can play ball better and run faster. At school I am finding I learn better. I am happy. I think I will live a long life.

On World AIDS Day I went with my granny to a big meeting. I was told to stand and hold a candle. I told them that every day I am taking my pills. I was shy in front of so many people, but I was proud too, because we went there with some pupils from my class. They came to see me talk. It was nice to travel with them in the bus. We were singing all the way. I think they love me. His grandmother Mathembisile Mdingwe:

After these months of taking pills, Zamo is stronger. When we took him to the World AIDS Day meeting, I was very proud to see him speak. I saw that some people were crying when they heard what he was saying. I was so happy that I stood up and danced with the other people.

Sometimes when I look at Zamo, I am sad, because I think of his mother and all the pain she had with her disease.

A World Distorted by AIDS

Africa dwarfs other continents in this cartogram, where each country's size reflects the number of people with HIV/ AIDS. Southern Africa has been hardest hit--in Botswana one in five people is infected.

• Number of people worldwide with HIV: 40 million; number in sub-Saharan Africa: 28 million

• Percent of HIV-positive people age 15 to 49 worldwide: 1.1 percent; percent in sub- Saharan Africa: 8 percent

• Number of people in sub-Saharan Africa contracting HIV daily: 8,500; number dying of AIDS daily: 6,300

• Number of children under 18 orphaned by AIDS worldwide (as of 2003): 15 million; number in sub-Saharan Africa: 12.3 million

• Number of HIV-positive South Africans: 5.3 million, more than any other country in the world

• Percent of pregnant women in South Africa who tested positive for HIV in 2004: 27.9

 Number of South Africans needing ARV drugs to prevent progression of the illness and death: 983,000; number receiving medication: 117,000  Annual cost of three-drug, generic ARV regimen per patient in Lusikisiki: about $650; cost per patient for ARV drugs in the U.S.: $10,000 to $15,000

• VOICES OF THE STRICKEN Against the backdrop of Gideon Mendel's images, hear Nomfumaneko, Zamokuhle, and others tell their own tales of coping with this modern plague. You'll also hear Mendel's reaction to the people of Lusikisiki, recorded in his audio diary. Go to ngm.com/africa.

By Gideon Mendel Source: National Geographic, Sep2005, Vol. 208 Issue 3, p66, 8p