A Mother’s Personal Fight to End TB and HIV

By Carol Nawina Nyirenda

August 29, 2018

My husband died in 2001 after a short illness. Shortly after, I developed a dry cough which lasted for several months. The early diagnosis from the doctors was chronic bronchitis, but it turned out to be extra-pulmonary tuberculosis (TB). Even so, my illness seemed to be too persistent. My brother, a physician, suspected something else was wrong. He asked me if I might have HIV.

I was immediately indignant. I had never strayed from my husband and I could not wrap my mind around how else I could have contracted the virus.  Protesting loudly, I followed his suggestion anyway and got tested for HIV. The results changed my life forever.

I was indeed HIV-positive, and I had sarcoma, an HIV-related cancer as well as TB. To say it came as a horrific shock, would not begin to convey how blindsided I was. That reaction had to be short-lived, however, as I contemplated what my diagnosis meant. I had a 12-year-old son and a nine-year-old daughter.  We had nothing, and there I was suddenly facing life-threatening medical conditions and a mountain of medical bills. I was angry and filled with despair.  

To escape the stigma, I moved towns in our native Zambia and opened a restaurant to support my family. But once people found out I was HIV-positive, they stopped coming. Sarcoma soon took the use of my legs. I was bedridden in a Lusaka hospital with full-blown AIDS, refusing medication—just waiting to die.

One day my daughter visited. “Mommy!” she yelled, smothering me with hugs and kisses.  Her joy at seeing me broke by heart and marked a new beginning for me. There I was, completely wasted away – mere skin and bones—yet all she could see was her mom. Her love was the first positive emotion I had felt in longer than I could remember. I vowed then that I would recover.

In the process, I made a pact with God. I promised Him that if I lived, I would be open about my HIV status and I would help save lives. A generous member of my church was my early answer to prayer, paying for my medication in the early stages.  I later enrolled in the free rollout of antiretroviral therapy funded by the U.S President’s Emergency Plan for AIDS Relief (PEPFAR). I joined a support group, the first in Zambia to receive help from The Global Fund to Fight AIDS, Tuberculosis and Malaria.

In 2006, I researched HIV and attended an AIDS conference in Toronto. There, I learned that TB is the main killer of people living with HIV.  I discovered, too, that I could use my voice and make a difference for people suffering from these conditions. In 2007, I founded the Community Initiative for TB, HIV/AIDS & Malaria, and received our first funding from The Global Fund. We train volunteers to provide treatment support, advocate for policy change, and create community demand so patients seek help for TB and HIV. We now have close to 500 volunteers in 35 districts across Zambia, and 75 parliamentarians have signed on to the Zambia Parliamentary Caucus on TB, which we helped to form.

This is my calling.

Increasingly, I feel like I’ve done my bit at the international and regional levels to advance the fight for those suffering these chronic conditions. My children are proud of me. I am so happy that I took my inspiration from them, committed to surviving, and turned a direly negative situation into something positive.

There is no resting though.  People continue to die from AIDS every day and we need more tools and drugs to end TB by 2030. Otherwise, we risk losing too many people in the prime of their lives to these conditions that are both preventable and treatable.

Take Action Challenge:

  • Every day between now and the United Nations High-Level Meeting on TB, let’s flood Twitter and Facebook with calls for Heads of State participation at the meeting. You can use the templates available here to build your messages.

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