Patient Story: "This painful treatment is my only way out of drug-resistant TB"

By Baikong Mamid, MSF Communications Officer

Swaziland 2009 © MSF

Nonkululeko Mamba

Nonkululeko Mamba, 25, sits listening quietly to one of the speakers attending the International Consultative Workshop convened by Doctors Without Borders/Médecins Sans Frontières (MSF) and the Ministry of Health of Swaziland. She sits among the group of international health experts who have come to discuss the situation she and hundreds of thousands of people find themselves in. Her friend approachs me and says that Nonkululeko wants to share her story. When I scan the crowd to find her, I see this stunning woman in a bright yellow top and neat black skirt. Who would ever think that she could be HIV-positive and have drug-resistant tuberculosis (TB)?
This is Nonkululeko’s story.

“I help patients waiting for their treatment for HIV and TB. I don’t want them to suffer the way I did,” she says, explaining her job at the Hlatikulu hospital run by MSF and the ministry of health.

Nonkululeko, speaking in a soft voice and with surprising shyness, journeys to the Hlatikulu hospital, a 30-minute drive from her home, to help other patients by teaching them about the importance of taking their drugs, and offering counselling and encouragement. She enjoys her new role because she can support people who feel alone and motivate them to fight their TB.

“I understand what other patients are going through because, after all, I am also a patient. I take a minimum of 15 pills each day just to fight against drug-resistant TB. These drugs are of different sizes. Some are the size of wheat grains or even bigger than that, the size of a big bean. It is difficult, but I don’t have a choice because I want to live a normal life. After three years, I finally got used to taking a lot of drugs. But it would be better if all the drugs could be combined into one. It would be easier and less burdensome. In the first phase of my treatment, I had to walk to the clinic every day for eight months to get an injection. When I was very weak, I used to take a mini-bus.”

Nonkululeko tested positive for HIV in 2006. After two months, she started coughing and developed an incessant fever. She went to the nearest hospital which was in the capital city, Mbabane, in order to get tested. The results showed she also had TB.

“My world shattered. I cried and cried, until my eyes had no more tears to shed. I am shy. I didn’t have any friends. I was so weak. I just waited for my mother to serve my food. I couldn’t do anything. I asked God why he had let this happen,” she says.

After six months of treatment, her doctor informed her that her treatment was failing to fight the disease. “ ‘You are resistant to the drugs,’ the doctor told me. I asked what it meant, but she didn’t explain anything. I didn’t know what was happening. They referred me to Hlatikulu hospital in the Shiselweni region. There, they explained to me that drug-resistant TB is more expensive to treat than the ordinary one. It also means taking more drugs, treatment lasting minimum of two years, and painful injections too.”

The side effects for drug-resistant TB treatment can be very severe. “My feet are painful most of the time. It is difficult to walk. I always have a fever. And every morning when I take all these drugs I feel so sick. It is too much. But do I have an option? I want to live a positive life and this is my way out.”

Today, Nonkululeko has managed to become a strong and confident woman. She mingles easily with others, and she is happy. She still faces stigma from others who recoil from her or whisper about her as she passes them on her way home. But she has learned to cope. She has many friends now. “When I am in the clinic, I feel that everybody needs me. My co-patients need me. They all come to me and they feel sad when I am not around. Helping others who are also like me brings me the greatest of happiness.”