Lucy Chesire: "The three big scars in my life are because of TB-HIV co-infection"

Lucy Chesire is the coordinator of the Kenyan chapter of the non-governmental organisation, Advocacy to Control TB Internationally. After being diagnosed with HIV in 1992, she contracted TB and had to undergo a series of painful surgeries due to poor diagnostics. She told IRIN/PlusNews about her determination to help people co-infected with TB and HIV receive better care in the future.

“I found out I was HIV-positive because my boyfriend at the time kept insisting that we take a test. When the test results returned, he told me that he’d known when he met me that he was HIV-positive.

“It was difficult to deal with at first because of the high stigma in those days, but I eventually saw that I needed to come out and let people know my status. I am a clinical dietician and I felt breaking the silence would help decrease stigma and discrimination among healthcare workers.

“In 2000, my immune system went very low and I lost a lot of weight. I went for a TB test but the test showed no signs of TB, despite the existence of all the outward signs and symptoms. I was put on ARV [antiretroviral] treatment, and the doctor recommended that I undergo knee surgery to test for TB in my bones; the test was positive.

“The TB and HIV medication had a complex reaction; although I was getting stronger on the ARVs, the TB meds simply didn’t work, so I developed pulmonary TB and had another three surgeries on my chest – I always say the three big scars in my life are because of TB-HIV co-infection.

“I spent seven months in the hospital, but I didn’t improve. Eventually the doctors discharged me - they discharged me to die. When I didn’t die, I decided to take up the cause of TB-HIV co-infection to make sure that TB diagnostics and treatment, which are still so outdated, are modernised, and that people living with HIV are all screened and treated early and properly for TB.

“These are two diseases in one person, so they need one response.”

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