News Tuberculosis (TB)

Cape Town TB activist to hear again

Phumeza Tisile, 24, was told that she would die three times before she beat extensively drug-resistant tuberculosis (XDR-TB). She survived but lost her hearing. Now, an outpouring of goodwill has given it back to her.

Phumeza Tisile was cured of XDR-TB with the help of MSF-sponsored linezolid. She recently delivered a DR-TB manifesto she co-wrote with her doctor to the World Health Assembly. Signed by DR-TB patients and doctors from around the world, the manifesto requested access to better medicines.

XDR-TB survivor Phumeza Tisile is set undergo a 20 February operation to fit her with the first stages of cochlear implants. The operation is the first step in Tisile’s journey to regain her hearing after she was incorrectly treated with the MDR-TB drug Kanamyacin

In 2010, Tisile was incorrectly diagnosed with multidrug-resistant (MDR) TB and placed on a gruelling treatment regimen. MDR-TB treatment included the injectable drug Kanamyacin, which left Tisile deaf. Later, doctors would discover that Tisile had XDR-TB and should never have taken Kanamyacin.

On 16 January, Health-e News reported on Tisile’s online campaign to raise the last R50 000 needed for cochlear implants that would allow her to hear again. Surgically implanted, these devices encode sound and relay them via electrical signals to the auditory nerve. Although the sound is heavily distorted, implant recipients eventually learn to recognise these sounds.

Within days of the article however, an outpouring of support raised about R60 000 for the surgery. Tisile said she watched the donations stream in online until she realised Tuesday morning that the campaign had surpassed its target.

“To everyone who has donated, a big ‘thank you,’” she said. “Life will change because of donations and kindness from people not only in South Africa but worldwide.”

The show of support left even Tisile, who has a passion for reading and writing, somewhat lost for words, she added.

“I don’t know how to explain this,” she told Health-e News. “I know people had my back – total strangers I had never met… it’s like (my) faith in humanity is restored.”

Tisile is also paying the kindness forward. Whatever money is not used for her surgery will go to a trust fund for other patients needing cochlear implants.

Dr Arne von Delft of the Cape Town-based non-profit TB Proof was one of the many people who banded together to help Tisile as part of a campaign dubbed “Friends of Phumeza.” Arne and his wife Dalene started TB Proof to raise awareness about occupational exposure to TB after Dalene contracted MDR-TB while working as a doctor. [quote float= left]“I know people had my back – total strangers I had never met… it’s like (my) faith in humanity is restored”

Dalene also faced possible hearing loss while on MDR-TB treatment. She listened to music non-stop while on treatment in anticipation of possibly going deaf.

Dalene ultimately lost her ability to hear high frequency noises and, like Tisile, went onto become an international TB activist.

Arne credits Tisile’s strength and character for endearing her cause to many.

“In the past week, we saw an unprecedented amount of donations,” he said. “Before we could register what was happening, the target had been met.”

“The dominant emotions were disbelief and gratitude for the remarkable generosity shown by so many,” Delft added.

Tisile’s 20 February surgery will be the first step in a long process to hear again.

“This is only the first, but very important, step for Phumeza,” he said. “A complex surgery awaits with a long and difficult rehabilitation process.”

“The quality of sound will never approach that of normal hearing, but will hopefully be an immeasurable improvement compared to the current exclusion she is experiencing,” said Arne, who added that Friends of Phumeza have also started a small trust to help cover the lifelong maintenance of the units. – Health-e News.

About the author

Laura Lopez Gonzalez

Laura Lopez Gonzalez was the Print Editor of Health-e News Service.