Book about hope keeps TB sufferer going
Phumeza Tisile's favourite book, Redeeming Love , is about hope because that is what helps her get out of bed each day.
The Khayelitsha resident has extensively-drug resistant XDR-TB and none of the medicines she has taken since her diagnosis in 2010 has worked.
But she is continuing with her 17-tablet a day treatment regime, even after learning in January, she was resistant to all TB medication available.
One of the medicines, Kanamyacin even left her completely deaf — a well-known side-effect of this drug.
Tisile, who lives at Medicine Sans Frontier’s (MSF) Lizo Nobando clinic in Khayelitsha, has not lost hope, however.
The book that inspires her most is about a man that does not give up loving his runaway wife. “This is similar to me because no matter how hard the situation is or how difficult it is, you must just pull yourself up and get what you want.”
A photo caption on her Facebook profile reads “Dear God, Today I woke up, I am healthy, I am alive. Thank you”.
Tisile, was in first year studying Human Resources Management at the Cape Peninsula University of Technology when she was diagnosed with TB in May 2010.
Communicating via SMS, as she can no longer hold a telephone conversation, Tisile said: “Everything happened so quick. I was enjoying the University life then all my dreams shattered”.
One Monday morning last year, she woke up unable to hear. Her deafness is irreversible.
“I never let myself get down. I stay positive by reading or watching interesting or rather inspiration things”.
Tisile now spends her time learning to lip read. “I wouldn’t say I am good at [lip-reading] but rather I try to understand [it].”
Tisile misses hearing the sound of music and her own voice.
At Lizo Nobando Clinic, she has been given a tailor made regimen of treatment, including medication only available from overseas. Because she was diagnosed late, doctors fear that any treatment might be too late.
Her doctor Jenny Hughes said: “At this point, there are really no more treatment options for Phumeza anywhere in the world.”
Dr Hughes has called for more drugs to treat XDR-TB.
“South Africa has a standard regimen of drugs to XDR-TB and we really have very little access to effective drugs. That’s what’s needed: more drugs to be developed and more access to drugs that are impossibly expensive.”
MSF has requested South Africa’s Medicines Control Council (MCC) to make bedaquiline, a drug still under clinical trials, available to treat patients like Tisile.
The MCC told the Times last week they would not make bedaquiline available for “compassionate use” as it needed more clinical testing, but have yet to respond formally to the MSF.