Photostory: The TB survivors fighting for change

The 'TB leaders' project is empowering a new generation of TB activists to work for better treatment, prevention and care

28 May 19

Ingrid Schoeman, above, contracted drug-resistant tuberculosis (TB) in 2012 while working as a dietitian in hospitals in the Eastern Cape, South Africa.

She underwent two years of treatment, and almost died from liver failure caused by the TB medication. She was in a coma for several days, spent one month in intensive care and was hospitalised for 75 days.

“I was fortunate to have access to excellent medical care when I was sick,” she says, “but I realised that most people with TB do not. Our laws and policies [in South Africa] enshrine the right to health for all, yet equal access to quality TB services is not the reality.”

Ingrid is part of MSF’s ‘TB leaders’ project, which aims to empower a new generation of TB activists to work for better treatment, medications, prevention and care.

Although tuberculosis is the leading cause of infectious death in South Africa, only 0.2 percent of the total current national budget for HIV/AIDS, TB and maternal and child health has been allocated to TB treatment.

Ingrid and her story form part of a photo series commissioned by MSF to promote the contribution that local TB advocates have made in the fight against TB.

The survivors

Prince Nhlanganiso Zulu, the eldest son of Zulu King Goodwill Zwelithini and Queen Buthle MaMathe, was diagnosed with TB in 2010. He spent three months in a Durban hospital before having one of his lungs removed.

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 mind-set 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.”

Phumeza Tisile, from Khayelitsha in South Africa, was diagnosed with TB in 2010. Her diagnosis later changed to multi-drug resistant TB, and finally extensively drug-resistant TB. While on treatment Phumeza began speaking out about the impact the drug regimen was having on her body and mind.

As a result of her treatment, Phumeza 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.

“I like to promote the idea that often the most meaningful thing you can do as a survivor of TB is share your experience directly with someone who has TB, helping to keep them positive on what remains a very difficult journey,” she says.

“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 Miss South Africa 2018.

Tamaryn 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 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. Many treat TB sufferers poorly out of fear that they will become infected,” she says.

Tamaryn launched the #BreakTheStigma campaign in 2018 to contribute to broader TB awareness.

Thabo Plelesane is a TB survivor from Klerksdorp in the North West Province of South Africa. Thabo has been diagnosed and treated for TB five times over the course of his life, the first time 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 caused his father’s death.

“I have had to live with 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.

Media personality Gerry Elsdon was diagnosed with TB of the womb in 2002 and has been raising awareness around TB for 17 years, arguably making her South Africa’s original TB “ambassador”.

“Like a lot of people I thought TB only affected the lungs, I didn’t realise it was possible to get TB in other parts of your body, until I experienced it myself.

“I realised 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, Gerry adds, “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.”

“There is a lot of work still to do 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.”

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