This project was commissioned by Doctors Without Borders.
Prince Nhlanganiso Zulu - KwaZulu-Natal, South Africa - 11/03/2019
Prince Nhlanganiso Zulu, the eldest son of Zulu King Goodwill Zwelithini and Queen Buthle MaMathe of the Dlamahlahla, from KwaZulu-Natal in South Africa. He was diagnosed with TB in 2010, after which he spent 3 months in a Durban hospital before having one of his lungs removed.
“I want people to realize that I no longer have all my body parts, thanks to TB - I believe many people can relate to the pain of this.”
As a TB survivor, the Prince devotes much of his time to social and health advocacy. He is passionate about raising TB awareness, and in his capacity, as National TB Ambassador he has been visiting many male-only, predominantly Zulu hostels in KwaZulu-Natal and Gauteng.
“Many of us Zulu men are trapped in this habit of avoiding health facilities when we do not feel well – it’s an old mindset and for this to change men are going to have to step forward to set a new example. My ambition is to start this movement.”
Goodman Mkhanda - Khayelitsha, Cape Town, South Africa - 07/03/2019
Goodman Mkhanda was diagnosed with extremely drug-resistant TB (XDR-TB) in December 2017, in Cape Town, South Africa. It took four years from his diagnosis to his cure, in contrast to the span of traditional treatment, which can last anything from 9 -24 months.
“My doctor sat me down and said I think it’s time for you to talk to your pastor because the treatment isn’t working. I said are you saying I’m going to die and she said yes I think so.”
Upon asking if the TB could be cut out and a chest scan, surgeons found a cavity on Goodman’s left lung, which they believed the medication was not reaching. They removed the lump and Goodman was later declared cured of XDR-TB.
Goodman was one of the first people in South Africa to repeatedly and passionately speak out about his struggle with XDR-TV while still on treatment. He works with TB advocacy groups to call on the government to not only broaden access to new drug-resistant TB medicines, but to also invest in TB research and development and to push other governments to do the same.
Kelly Khumalo - Johannesburs, South Africa - 12/03/2019
Kelly Khumalo is a South African popstar and TB survivor, who started contributing to TB awareness in 2018 after being asked to serve as a National TB Ambassador, alongside other high profile South Africans.
Mbali Zulu - Eshowe, South Africa - 22/02/2019
“I have known about TB most of my life,” says Mbali Zulu, an enrolled nurse working in Eshowe Hospital in KwaZulu-Natal. My mother was a midwife, and she was infected with extra-pulmonary TB while at work. The TB was in her spine, and it caused her so much pain she had to stop work, and was boarded. She died a few years later.”
Zulu says witnessing her mother’s suffering inspired her decision to become a healthcare professional, focused on TB. She has worked as a data capturer in a TB tracing project, and as an outreach nurse administering the antibiotic injection that sufferers of drug-resistant TB received daily as part of their treatment regimens.
“The injection was terrible. Zululand is hilly, and there are many households you cannot reach by car, meaning the patient would have to walk to the nearest road to receive the injection, and it would be so painful they would have great difficulty walking back home,” she recalls.
Zulu says the treatment regimens for drug-resistant TB has improved since it became all-oral in 2018, but that “adherence to treatment is still very poor.”
“The number of pills people have to take is still very high, roughly 28 a day, depending on weight, and while the terrible side-effects caused by the injectable are no more, the treatment still causes changes in skin color, rashes on the skin, and can have some effects on the heart. Many quit rather than face these side-effects, so we still have a long way to go to improve treatment and bring down the number of TB deaths,” she says.
Dr Zolelwa Sifumba - Eshowe, South Africa - 21/02/2019
Dr Zolelwa Sifumba contracted multi-drug resistant TB in 2012 while completing her medical degree as a student at the University of Cape Town in South Africa, and during the 18 months she spent on treatment she pushed her faculty to radically overhaul its approach to occupational health.
“I was infected on my hospital rounds. At the time infection control at some of the hospitals we worked in was not strict – finding a protective mask was often difficult or impossible, and there was a bit of a culture of medical students not wearing masks, as if we were somehow immune,” Sifumba recalls.
Healthcare workers are naturally at risk of TB infection, and according to a 2016 Global Health report South Africa accounted for 21% of reported healthcare worker TB cases, exceeded only by the number of cases in China.
“To be honest I don’t enjoy telling my story, it was a difficult time and public appearances are not easy for me. But I also know that my testimony has forced improvements in occupational safety for some healthcare workers, and I will continue to speak out for long as healthcare workers in South Africa are forced to work in hostile conditions,” she says.
Gerry Elsdon and Tamaryn Green - Johannesburg, South Africa - 12/03/2019
Media personality Gerry Elsdon was diagnosed with TB of the womb in 2002, and has been publically raising awareness around TB for 17 years, which arguably makes her South Africa’s original TB “ambassador”.
“Like a lot of people I thought TB only affected the lungs, I didn’t realize it was possible to get TB in other parts of your body until I experienced it myself. I realized there was a deficit of information on TB in public, and felt I could use my profile to do something about this,” she says, although she adds that “people weren’t really listening to the messages to begin with. It took a lot of perseverance, and a lot of reminding myself why I was doing it.”
Today Elsdon coordinates the National Ambassadors program on behalf of the National Department of Health, a group of high-profile individuals whose lives have been touched by TB.
“TB remains a highly stigmatized disease and so an important aspect of patient advocacy is to make people who are suffering from TB understand that they are not alone, that there are others like them, and that there is no shame in sharing the impact that TB has had in their lives,” she says.
Elsdon is well placed to evaluate the progress that has been made on TB in South Africa. She describes her excitement at the unveiling of the first GeneXpert machine in KwaZulu-Natal in 2011, “knowing that the use of these machines would revolutionize the diagnosis of TB in the country”. She speaks of her pride at witnessing the Minister of Health and the President speak at the United Nations High Level Meeting of TB in 2018, committing to the eradication of TB in South Africa their lifetimes.
“There is a lot of work still to do,” says Elsdon, “but South Africa is one of the very few high-burden countries in the world tackling its TB epidemic head-on, and I do believe that if the current momentum on TB continues to build that we will get there – we will beat this ancient and deadly disease called TB.”
“TB is not only a physical disease but an emotional and mental one, too, and for that a support structure is critical,” says Tamaryn Green, a final year medical student and the current Miss South Africa. Green was diagnosed with TB while at University and believes her studies might well have been interrupted if it wasn’t for the support of her parents.
“Another other big issue is stigma – a lot of TB carriers don’t come forward due to fear of what others will think and say, and many stop taking treatment for the same reason. On the other side, many treat TB sufferers poorly out of fear that they will become infected,” she says, adding that she launched the #BreakTheStigma campaign in 2018 to contribute to broader TB awareness.
“It has been incredibly gratifying to receive positive responses from people across the world, saying that they related to my campaign and that it has helped them to start talking about their own TB experiences,” says Green.
Thabo Plelesane - Klerksdorp, South Africa - 12/03/2019
Thabo Plelesane is a TB survivor from Klerksdorp in the North West Province of South Africa. Thabo has been diagnosed and treated for TB 5 times in his life, the first time being when he was 13 years old.
Today Thabo, now cured of TB, uses his experience to warn others about the dangers of stopping TB treatment. When Thabo was 13 he started skipping treatment as a result of the stigma he was experiencing at school. “It turned my urine orange, and my classmates mocked me about this,” he recalls During this time South Africa’s Department of Health had not adopted a systematic approach to TB treatment, and no effort was made to directly observe Thabo’s treatment, or to trace family members and friends to see if any of them had been infected.
Both his parents and his niece contracted TB, and TB eventually ruined his father’s lungs, causing his death. “I have had to live with the knowledge that by failing to take my treatment properly the TB kept coming back and that I probably infected members of my family,” he says.
Nonjabulo Madida - Eshowe, South Africa - 22/02/2019
28 year old Nonjabulo Madida from Empangeni in KwaZulu-Natal Province was diagnosed with multi-drug resistant TB (MDR-TB) in 2015 and spent two years on treatment. She continues to speak out about the harshness of the treatment, stressing that although the treatment term has come down to 9-12 months it is still far too long, and while the daily injection she had to endure was replaced in the MDR-TB treatment regimens replaced by oral medication the “pill burden” of MDR-TB treatment.
“The number of pills you take depends on factors like body weight, and my body weight at the time was 70kg, which meant 22 pills in the morning and 6 pills in the evening,” she says.
“In the first month, the pills caused constant vomiting. I would vomit while taking the pills, wait five minutes, and then try again,” she says.
“A lot of people believed that replacing the injection with pills would help more people to make it to the end of their treatment, but adherence to treatment remains a huge problem and a big part of the problem is the pill burden.”
Madida advocates for increased investment in TB Research and Development, believing that if a fixed-dose combination pill were to be developed for drug-resistant TB it would radically the pill burden and make treatment adherence much easier.⠀
Zandile Ngema, Cebile Mhlonga, Ozias Biyela - King Cetshwayo District in KwaZulu-Natal - 22/02/2019
Zandile Ngema, Cebile Mhlonga, Ozias Biyela are traditional healers in King Cetshwayo District in KwaZulu-Natal, attending a “TB Leaders” training run by Doctors Without Borders in Eshowe. They say they were inspired to learn more about TB by Prince Nhlanganiso Zulu, the son of the king of the Zulu nation and an outspoken TB advocate.
“It is important for us. People who are sick with TB consult us, and we see people dying,” says Mhlongo, while Biyela adds, “We can help if we learn about the disease – if we can identify it, and know where people can go for diagnosis and treatment, we can help.”⠀ TB has taken its toll in the lives of all three healers. Ngema’s sister has been diagnosed with TB twice. Two of Mhlongo’s family members have had TB, and one died of the disease, while TB has killed three members of Biyela’s family. “We have some status in our community, and can give talks about TB, and we can share information in our places of work,” Mhlongo says.
Phumeza Tisile - University of Cape Town - 14/03/2019
Phumeza Tisile, from Khayelitsha in South Africa, was diagnosed with TB in 2010, and her diagnosis later changed to multi-drug resistant TB, and finally extremely drug-resistant TB. While on treatment Tisile began speaking out about the impact treatment was having on her body and mind.
As a result of her treatment, Tisile lost her hearing. She eventually received two cochlear implants, paid for by privately raised funds. Having regained her hearing she committed to raising awareness around the harshness of drug-resistant TB treatment and the need for shorter, less toxic alternatives.
Tisile has been made her voice heard at many high-level events, including the World Health Assembly, The Union Conference, and the first-ever UN High-Level Meeting on TB.
“I like to promote the idea that often the most meaningful thing you can do as a survivor of TB is to share your experience directly with someone who has TB, helping to keep them positive on what remains a very difficult journey,” She says.
Phumeza and her story form a part of a 2019 World TB Day photo series commissioned by MSF in South Africa to celebrate the contribution local TB advocates have made in the fight against TB, aiming to inspire a generation of future “TB Leaders”.