“This painful treatment is my only way out of drug-resistant TB”, an ‘expert client’ from Swaziland shares her story
Nonkululeko Mamba, a 25 year old woman from Swaziland, is quietly listening to one of the speakers attending the International Consultative Workshop convened by MSF and the Ministry of Health of Swaziland. She sits amongst the group of international health experts who’ve come to discuss her situation as well as others like her. Her friend approached me and said that Nonkululeko wanted to share her story. When I scanned the crowd to look for her, I saw this stunning woman, in her yellow jersey and black skirt. Who would ever think that she could be HIV-positive and have drug-resistant TB?
“I help patients waiting for their treatment for HIV and TB. I don’t want them to suffer the way I did,” says Nonkululeko, explaining her job as an ‘expert client’ in the Hlatikulu hospital run by Médecins Sans Frontières and the Ministry of Health.
The naturally shy Nonkululeko comes to the hospital, a 30-minute drive away from her home, to help other patients, by teaching them how to take their drugs and counselling them. She enjoys her new role as she offers support to people who feel alone and encourage them to fight their tuberculosis.
“I understand what other patients are going through, because after all, I am also a patient. I take a minimum of 15 pills per day just to fight drug-resistant TB. These drugs are of different sizes. Some are as big as a bean; some are as big as wheat grains or even bigger than that. 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 became feverish. She went to the nearest hospital, which was in the capital city Mbabane, for testing and she found out 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 recalls.
After 6 months of treatment, her doctor informed her that her treatment was failing. “’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 means more drugs to take, a treatment lasting minimum 2 years, and 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 just like any other girl – strong, mingling with others, and happy. She still faces the stigma from others who are moving away from her or whispering about her 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.”
By Baikong Mamid
MSF Communications Officer - South Africa