TB activist can hear again
Cape Town – Phumeza Tisile, of Khayelitsha, was 19 when she was diagnosed with drug resistant tuberculosis – a disease that would later leave her with permanent hearing loss.
But today she is not only cured of the deadliest form of TB – XDR TB – she has also regained her hearing after cochlear implants. “For five years my world was silent. I couldn’t listen to my favourite music. Suddenly I couldn’t have conversations with people… it was complete silence.”
Tisile, 24, regained her hearing four months ago after Cape Town doctors Arne von Delft and his wife, Dalene, started an online campaign to raise funds.
In the campaign, “Friends of Phumeza”, the two doctors from a local NGO – TB Proof – banded together with Medicins sans Frontieres and Tygerberg Cochlear Unit TB to raise more than R200 000 that was needed for one of the two cochlear implants. Her medical scheme partly paid for the other implant.
Tisile was doing her first year in Human Resources at Cape Peninsula University of Technology when she was incorrectly diagnosed with multi-drug resistant TB and placed on a gruelling regimen of about 20 pills a day and daily injectables.
One of these injections was the drug Kanamyacin – an effective TB drug. Hearing loss is one of its side effects.
“I got up one day and suddenly I couldn’t hear any sound. Everything was silent. Doctors at Brooklyn Chest Hospital said I would never hear again. I was devastated,” she said.
Even though she became a TB activist and visited many countries around the world during the five years that she was deaf, Tisile said there was something missing.
“One of the highlights for me was delivering a TB manifesto to the World Health Organisation in Geneva. But still something was missing there. I longed to hear my voice when I spoke on that mic. I remember being so curious to hear other people’s accents, but it was a complete silence.”
Since she got her hearing back, Tisile says she
’s addicted to music. “I can sit with my earphones all day. Music is life to me and just having normal conversations with people and talk over the phone means the world to me. I consider myself very lucky that I never died from TB and to be able to hear again,” she said.
Dalene von Delft said seeing Tisile having a conversation with her mother, Nokuzola, for the first time in five years was moving. “They sat there… just chatting. We all celebrated with her.”