Tuberculosis Was a Nightmare for My Family

By Maurine Murenga

September 5, 2018

The toll of tuberculosis is huge. As a community educator working with adolescents living with TB, I see how they suffer. It’s frustrating and dehumanizing.

Worst of all, I saw this struggle in my son. One of the toughest moments of my life was when my son was diagnosed with TB when he was 13. It was a true moment of sadness as a mother.

When my son became sick with tuberculosis, the first sign was the sickness of the stomach; at one point the doctor said he had ulcers. Later I saw his other symptoms: swollen lymph nodes, thinning hair, weight loss. I had just lost a close friend to TB six months before, and I recognized the signs. People with TB become weak very quickly; in two days you almost can’t recognize them. I was very scared for my son — his illness was difficult to diagnose.

His body was not very responsive to treatment at first, and he was in a lot of pain. Getting him to take the drugs was difficult. Many times he threw them up or threw them out and I’d have to pick them out of the dustbin. It took a lot of begging, a lot of crying. It was a nightmare.

The disease was draining to the family finances and family emotions. The smiles were gone from our faces. We were scared about him making it through. It was hard for us to cope.

Tuberculosis, especially in high-burden communities like Siaya County, Kenya, where I work, is misunderstood. Many believe wrongly that someone has to cough for two weeks to be diagnosed with TB. Health advocates like me and have learned the symptoms to educate people about TB. Even medics don’t always have current information, and those treated in public hospitals might not be seen by a TB specialist. Many parents don’t want to give their kids medicine, not understanding possible side effects. We lost a lot of children that way.

In Siaya county in western Kenya, Belinda Achieng has her child examined by community health volunteers supported from the Global Fund.

That’s why strengthening the capacity of people, institutions, and resources that deliver health care services to treat TB is critical, in addition to continued domestic funding and strong support of The Global Fund to Fight AIDS, Tuberculosis and Malaria. My organization, the Lean on Me Foundation, works with 3,000 young women and girls in southwest Kenya living with HIV, providing access to education, treatment, counseling, peer learning, and leadership training. You simply cannot do this work without talking about TB. It is the No. 1 killer of people living with HIV.

I understand these girls because I was one of them. I faced challenges living with HIV as a young, pregnant girl — it was a dark moment of life. Those of us who survived did not lose the passion of lifting someone up. I felt I needed to do something to make someone better, that’s why I founded Lean on Me.

My commitment to helping others makes this fall’s upcoming United Nations General Assembly High-Level Meeting on TB is so important to me. What doesn’t get talked about doesn’t get done. The meeting offers an opportunity for TB to be discussed at the highest political levels. At this meeting, I am hoping to see commitments from governments and the global health community to developing new drugs, combating stigma, and ensuring no one is left behind in TB diagnosis and treatment. We must end TB in this generation.

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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