“I didn’t decide to be an activist, it just happened; turns out I’m good at it and I enjoy it,” says 23-year-old Phumeza Tisile, whose blog on her struggles with multiple drug resistant tuberculosis (MDR-TB) and extremely drug resistant TB (XDR-TB) – and life thereafter – has helped many in South Africa.
“As much as it helps others who are going through treatment, I’m happy to help where I can. I still get personal messages on my Facebook page from people begging for better drugs.”
Born in the Eastern Cape, Tisile studied in Cape Town and was doing a human resources qualification when TB struck “with a huge bang”.
“It was in 2010, the time when South Africa hosted the World Cup. At first no one knew what was wrong with me, they assumed it was pneumonia, but instead of getting better I got worse.”
She was diagnosed with ordinary TB, then MDR-TB (the complicated drug regimen includes a daily injection which can, and in her case did, cause deafness as a side effect).
The nightmare grew into a two-year battle as she was then diagnosed with XDR-TB. Medecins sans Frontieres (Doctors Without Borders) was able to assist the young woman with a vital drug to beat XDR; winning that fight is something she characterises as a “huge achievement”.
Tisile started blogging while at the TB Care Centre. “Many people wanted to give up, but when they read my blog they saw that I had had it worse and their problems are a drop in the ocean. It’s a spirit-lifter when you know someone out there cares.”
In 2012, Tisile and MSF doctor Jennifer Hughes co-authored the ‘DR-TB Manifesto’, which explains the terrible situation facing people with drug resistant TB worldwide, and makes a call for: 1) universal access to diagnosis and treatment, 2) hugely improved treatment and 3) enough funding to achieve this.
In mid-May, Tisile headed for the World Health Assembly in Geneva to hand over the manifesto and ask governments, the World Health Organisation, major health role-players and the research community to prioritise the fight against drug-resistanty TB. — Mandi Smallhorne