S3E5 - Phumeza Tisile’s story: surviving the worst of tuberculosis
Connecting Citizens to Science · The SCL Agency
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Show Notes
Phumeza Tisile is a TB survivor, researcher and advocate for TB patients at TB Proof. In this episode Phumeza shares her moving and powerful lived experience of being an Extremely Drug Resistant (XDR) TB survivor. She starts her story describing the challenges of first understanding her symptoms and gaining an accurate diagnosis of TB, how this led to complex treatment of taking 30 tablets a day and an injection, followed by 2 years of hospitalisation and loss of hearing for 5 years. Her research is now focused on the immediate and long-term impacts of being a TB patient and survivor including managing stigmatisation, disability and mental health conditions. Phumeza calls for researchers to be aware of the language they use to describe people with lived experience and challenges scientists and decision makers for more affordable treatment strategies that meet patients where they are- geographically, financially and personally.
- The Global Coalition of TB Advocates(GCTA) is a global platform of people affected by TB that amplifies community engagement and strengthens the capacity of TB activists at all levels .http://gctacommunity.org/?v=7d31e0da1ab9
- TB Proof Facebook page https://www.facebook.com/TBproof/