Phumeza’s chance to hear again

| Daneel Knoetze
Phumeza Tisile, 23 years, at her home in Khayelitsha, South Africa on August 16, 2013, the day she celebrated her cure from XDR-TB. Photo by Sydelle Willow Smith. Caption and photo from MSF website.

A fundraising campaign has sprung up to pay for cochlear implants that would help former drug-resistant tuberculosis (TB) patient and current activist Phumeza Tisile regain her hearing.

Since being cured of the disease in August 2013, the 24-year-old from Khayelitsha has campaigned alongside doctors from Medecins Sans Frontieres (MSF) for better and less harmful drugs to be developed for the treatment of drug resistant TB. In May this year she took her plea to the 67th World Health Assembly in Geneva along with a petition containing 55,000 signatures.

There she spoke of the “life-destroying” side effects of the drugs she received in state care. Kanamycin injections resulted in her becoming completely deaf.

Now, fellow patient activist and friend Dalene von Delft is heading up a campaign to raise the R200,000 needed for Tisile to receive bilateral cochlear implants which would help Tisile regain her hearing. Von Delft, diagnosed with drug resistant TB in 2010, experienced the early phases of hearing loss before accessing a new TB drug, bedaquiline, through a compassionate use program. This allowed her to stop taking the drugs that result in hearing loss.

“We were in one of the most beautiful cities in the world (Paris) and she just received a standing ovation for a speech she delivered. There was sadness in her eyes, loneliness. She was still shut out from the world of sound,” says Von Delft, reflecting on meeting Tisile during an advocacy event in 2013.

The cochlear implant unit at Tygerberg Hospital, the only one of its kind in the region, has a special on the procedure which ends at the end of January, meaning the “Friends of Phumeza” are racing against a 23 January deadline to raise the current shortfall of R100,000.

Von Delft stresses that the procedure will benefit not only one person’s life, but will mean that Tisile can become a more effective activist to fight for access to better treatment for drug-resistant TB patients around the world.

Donations are being made via the GivenGain website, where readers can learn more about Tisile’s story.

Tisile’s advocacy was also covered in GroundUp’s recent coverage of the need for new and better drug-resistant TB drugs.

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TOPICS:  Health

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