Why we must do more to defeat tuberculosis

World Tuberculosis (TB) Day, to be observed on Friday March 24, brings back painful recollection of how I almost lost my life to this dangerous but highly curable disease. My journey stared in 2011 with a fever, unusual fatigue, night sweats, weight loss and a swollen stomach, but no sign of the cough usually associated with TB.

I was put on antibiotics but there was no improvement and soon after, came the first surgery to remove puss from my stomach.

Unfortunately, there was still no change, since my condition had not been properly diagnosed. Only after a second operation was a sample tested and the doctor diagnosed tuberculosis.

The diagnosis was confusing to me because, until then, I thought TB was a disease of the lungs. I found out, however, that I had contracted Zoonotic TB, likely through consuming unpasteurized milk or under-cooked meat.

Ensuing treatment included one month of daily injections and seven months of anti-tuberculosis drugs.

Taking the pills was a challenge since they are big and difficult to swallow. One nurse’s advice to swallow them with porridge, though well-meaning, had the opposite effect since I would immediately throw up whatever I had eaten to take the pills. I was, however, determined to get cured so I did whatever I had to in order to take the medication.

During this time I suffered severe weight loss as well as memory loss and confusion. Doctors said, as a result of the rapid weight loss, my brain was protecting itself by going into “standstill” mode. I was losing my capacity to function as an adult.

My experience, and recovery, has taught me valuable lessons about TB. I learnt this disease does not only affect the lungs but it can affect most parts of the body. Touching someone who has the disease does not spread it, because the bacteria is transmitted only through the air.

People with active tuberculosis in their lungs contaminate the air when they cough, sneeze, laugh, spit or speak. The bacteria stays in the air for hours and when someone else breathes that air, they may become infected.

However people who have latent tuberculosis, or extra-pulmonary TB, do not spread bacteria into the air and cannot transmit the infection.

This type of TB is spread through the blood to other organs and typically affects the kidney, lymph nodes, brain cells, membranes around the heart, joints, and reproductive organs. The symptoms of extra pulmonary TB are vague. They include: Fatigue, poor appetite, fever, night sweats and weight loss.

Tuberculosis that affects the brain (tuberculosis meningitis) is life threatening and its symptoms include: Fever, persistent headache, neck stiffness, nausea and drowsiness, that can lead to a coma.

As a TB survivor, I now work as a champion creating awareness in my community about the disease and I take great care to make a distinction between the form of the disease that affects the lung/pulmonary and that which affects other parts of the body or extra pulmonary.

The feedback I get from the community is that most people are unaware of extra pulmonary TB, the same way I was prior to contracting the disease. Most are also unaware that TB can be transmitted from animals to human.

This ignorance around the disease means that symptoms are too often treated as something else, and patients are lost, in the end, to a disease that is preventable, treatable and curable with free medication.

The solution lies in more public education. I am calling on the health sector, private sector, civil societies and policy makers to lead the way by making more information and education materials available.