Episode 6

S3E5 - Phumeza Tisile’s story: surviving the worst of tuberculosis

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. 

About the Podcast

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Connecting Citizens to Science
Researchers and scientists join with communities and people to address global challenges

About your host

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Kim Ozano

Research and Development Director at SCL and co-founder and host of the ‘Connecting Citizens to Science’ (CCS) podcast. Kim is a health policy and systems researcher with over 15 years’ experience of designing, delivering and evaluating health and development projects in the Global South and UK. She is an implementation health research specialist, as can be seen from her publications and work at the Liverpool School of Tropical Medicine, where she remains an Honorary lecturer.
Kim creates space in Connecting Citizens to Science for researchers and communities to share their experience of co-production to shape policy and lasting positive change.