“I didn’t want to be a statistic.” Sophie Woolley interviews South African TB campaigner Phumeza Tisile

Posted on August 18, 2014

South African campaigner, Phumeza Tisile, 23, caused a stir recently when she spoke at the UN World Health Assembly in Geneva.

After hours of speeches about Tuberculosis (TB), Phumeza’s harrowing yet positive story about her treatment for the deadliest strain of TB brought the only applause of the day.

“I couldn’t hear the clapping but I could read the body language very well! I was like wow – I was excited and proud.”

Did they give her a standing ovation? “No, that was when I was in Paris, the standing ovation,”  she replies simply, as we sit in her two-roomed shack in Khayelitsha, a large Cape Town township, with one of the world’s highest concentrations of TB cases.

TB is one of the world’s biggest infectious killers.

Phumeza has been cured of Extensively Drug Resistant TB (XDR-TB) but lost her hearing four years ago, as a result of one of her treatments.

She doesn’t sign, or lipread, so I type my questions into a laptop for her to read, and she answers in her isiXhosa accented English (Xhosa is one of the 11 official South African languages).

The standing ovation happened last November, she says, when she addressed the Union World Conference on Lung Health in Paris.

Phumeza Tisile

Phumeza Tisile

Phumeza turned campaigner whilst still undergoing treatment for XDR-TB. She felt it was unacceptable that the cure rate was so low, and the drug treatments so awful.

She co-wrote a TB Manifesto with Dr. Jennifer Hughes (her doctor at Lizo Nobanda, a clinic run by Medecins Sans Frontiers/Doctors Without Borders).

They called for better TB funding worldwide, more research, awareness, faster diagnosis, more effective and less traumatic drug treatments, and a change in drug patent laws.

Here’s a quote from Phumeza’s powerfully written manifesto:

“Most of us were exposed and became infected with DR-TB because of the poor conditions in which we live. Undiagnosed, this disease spreads among us. Untreated, this disease kills. But in the countries in which we live, fast and accurate diagnosis is rarely available and only about one in five of us actually receive effective DR-TB treatment.

Those of us “lucky” enough to receive treatment have to go through an excruciating two-year journey where we must swallow up to 20 pills a day and receive a painful injection every day for the first 8 months, making it hard to sit or even lie down. For many of us, the treatment makes us feel sicker than the disease itself, as it causes nausea, body aches and rashes. The drugs make many of us go deaf permanently and many of us develop psychosis.”

Phumeza went from being a student with dreams of moving to a wealthy Cape Town suburb, to full time patient. It took three years from Phumeza’s initial diagnosis, 20,000 pills, traumatic side effects, major lung surgery, many months in hospital, to be cured of XDR TB. She had to put her life on hold and dropped out of college.

“I’d heard about TB but never in a million years did it occur to me that I would be a patient”.

She was surprised, because she was not HIV positive – and she was healthy (people with HIV have weakened immune systems, and so are at increased risk from TB).

But Khayelitsha’s crowded conditions enable the airborne disease to spread fast in shacks, taxi buses and trains. Even healthy people cancatch TB. It is spread through coughing, sneezing or spitting.

Like many people with XDR-TB (the deadliest type of TB), Phumeza was diagnosed first with ordinary TB, then MDR-TB. This was because the diagnosis of XDR-TB takes a long time.

phumezapic (2)

She took a mountain of different tablets for MDR-TB, but her condition deteriorated and the TB spread to her brain. She also had painful Kanamycin injections, which can cause hearing loss.

“I woke up one morning and turned on the television. I thought the sound was broken or something or my ear was blocked with wax. I turned up the sound but it was not working.”

She tried listening to music with headphones, but heard nothing. She couldn’t hear her mum and started panicking. At the hospital “I told the sister that I can’t hear and she said something. I saw her lips move but I couldn’t understand what she was saying”

She says she doesn’t have tinnitus, and all she can hear is “that sound, doof doof doof,” she says, mimicking the low frequency reverberations of the profoundly deaf soundscape.

Phumeza said she would not have agreed to the injections if she’d been warned about the risk of hearing loss.

Phumeza says, “All of the people I know with TB who went deaf, they quit their medication and died. I’m the only person who is alive today, only me.”

I’m shocked by this observation, so I ask around. Local audiologists and medical staff who work with TB tell me they don’t agree with her comment. They say not all people who go deaf stop taking their medication and die. But it’s probably safe to say that the side effects of TB drugs are traumatic, which may cause people to stop taking them.

I asked Dr Hughes if hearing loss affected patient access to medical care and she said there was no research to support this. But “MSF is supporting the audiologists and counsellors to set up support groups for hearing impaired DR-TB patients.” These groups aim to help people stick to their treatments.

Phumeza has a hearing aid. “I don’t wear it. It’s not comfortable. For instance I can hear the bang of a door, but with talking, I can’t hear it, and it’s annoying”.

Phumeza can lipread her mother, but has trouble understanding other people. When she tells them she is deaf, they don’t believe her, because she can speak.

She says she misses being able to hear music most of all and used to love dancing. “I had music in my phone but I had to delete it, it was useless…I wasn’t angry or crying, I was like, okay, time to accept this thing – delete, delete, delete.”

Around the same time that Phumeza went deaf, she was also, finally, correctly diagnosed as having XDR-TB. She began taking a new cocktail of drugs and had major surgery, which left her with a broken rib and collapsed lung.

Remaining in hospital for eight months, she read voraciously and watched cheesy ‘soapies’ on TV – Afrikaans and Tswana language soap operas – the only subtitled TV shows in South Africa.

After a brief respite, the TB returned. Luckily she met Dr Jenny Hughes, the MDR-TB coordinator in Khayelitsha for MSF.

At the Lizo Nobanda clinic, Dr Hughes gave her a new, bespoke combination of drugs, some of which are not routinely or easily accessible for TB patients in South Africa. One of the drugs, Linezoid costs R700 (£38) per daily tablet, which most patients can’t afford.

Crucially, for a deafened patient, Dr Hughes explained the 17 tablet a day regimen by writing things down for Phumeza and doing follow up appointments so she could ask questions about anything she wasn’t sure about. But when the treatment didn’t work, the doctor told Phumeza she would probably die and advised her to see a priest.

Phumeza decided to carry on her treatment anyway. “I didn’t want to be a statistic – another person who died from TB”. Thanks to the pricey Linezoid, she survived and got better. After 18 months of this treatment Phumeza was declared well and cured.

Phumeza wants to pick up her life where she left off and go back to college, but she’s been left wondering how to work around her deafness.

“I didn’t want to learn to sign, it was not me. I wasn’t born deaf so I’m not sure if I’m going to adjust to that world – most of the people who do sign language can’t speak right? So I would find it difficult.”

Although the hospital said there was nothing they could do, Phumeza googled and discovered cochlear implants. She is hoping that she will be eligible for implantation and is waiting for a final assessment.

The idea of CI surgery doesn’t scare her, she says, because “I’m scared of nothing now. I’ve experienced lots of things, especially seeing dead bodies in hospital.” Often she’d spend the night next to the bodies of people who’d just died of TB.

Before she caught XDR-TB, Phumeza was studying for a degree and planned to work in business. She wanted to get a good job and live in a wealthy Cape Town suburb like Sea Point. Her dream to leave Khayelitsha still stands; but now she’s older and wiser, she’s less excited by the idea of business.

Her hospitalisation has inspired a fascination with healthcare and she’s thinking of training for a medical related career, like nursing.

And whilst plotting a bright new future, Phumeza continues to campaign locally and globally for better, more affordable TB treatment.

To make a donation to Medecins Sans Frontieres, just click here: http://www.msf.org.uk/make-a-donation

A note on the interview: I recorded the interview on a recording app and transcribed it by bluetoothing the audio to my AB Naida cochlear implant via a ComPilot device. Phumeza has a Xhosa accent, and so I slowed the recording down to half the speed in order to pick out quotes. 

Find Phumeza Tisile on twitter: twitter.com/Ptisile

Sophie Woolley is a writer and actor, currently living in South Africa. She works as a volunteer for Shine, a literacy programme for children, and likes climbing Table Mountain. Her favourite climb is the India Venster route on the north face. 

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