Conquering extra-pulmonary TB

TB is normally associated with the lungs so most people don’t realise that TB can affect other organs of the body – like the brain, stomach and joints and bones. Loina Loveness Charumbira, a 32 year-old site coordinator from Gauteng, was diagnosed with extra-pulmonary TB in 2008. She shared with us how she was diagnosed, her treatment and how she conquered this rarer form of the disease.

When Loveness found herself getting sick and after a few days couldn’t walk or talk, she was admitted to hospital for tests. The test for extra-pulmonary TB (EPTB) was uncomfortable and it took two days to get the diagnosis. A long tube was inserted in her nose which went all the way to her stomach. Fluids were drawn and taken to the lab for testing. The results came back positive for EPTB.

After being diagnosed, I was shocked. TB was the last disease I expected! But I also felt relieved knowing what exactly was causing me to be that ill.

The good news is that TB and EPTB is curable with the right medication and care. “Luckily, I was in a really good hospital with doctors and nurses who really love their jobs,” says Loveness. EPTB is treated the same way as regular TB, with a long course of antibiotics. Loveness was instructed to take the medication every day for six months and not to miss any days or to stop taking the medication, even when she started to feel better.

Some people have issues with taking tablets and Loveness is one of those people. She found it hard to swallow the tablets at first but after a few days she was able to take them without any problems. And the treatment for TB is completely free at any government clinic or hospital so she did not have to pay anything for the medicine or care she received.

It is important to get regular medical check-ups and test for HIV because TB affects people living with HIV more. Loveness suggests that you visit your nearest clinic if you have night sweats, loss of appetite, stomach pain or enlargement of the stomach (sometimes you can even look pregnant). And of course, if you have a cough for more than two weeks, this is the main symptom of regular TB which is the most common kind.

“It is important to continue taking the medication as advised by a doctor,” advises Loveness. “And try to live a healthy lifestyle!”

10 Things You Need to Know about TB

• Tuberculosis (TB) is an infectious bacterial disease which spreads through the air when infected people cough and another person breathes the droplets from the cough in.
• TB is our biggest killer. It kills 1.8 million people each year globally – more than any other disease. TB is South Africa’s leading cause of death.
• TB is curable with antibiotics and treatment is free. It is important to start treatment as soon as possible so get tested if you have a cough for over 2 weeks, lose weight and have a fever and/or night sweats.
• TB affects people who have weakened immune systems. 66% of TB patients are also HIV+. Know your HIV status and if you are living with HIV, get tested for TB straight away if you start coughing.
• Drug resistance is caused when people don’t get treatment or take their TB medicine properly. MDR and XTR-TB are growing problems in South Africa. They spread more easily and are much harder to cure than regular TB.
• Children under 5, healthcare workers and people in closed or confined settings like prisoners and miners are most at risk of getting TB.
• Many people get tested for TB but don’t return for their results. 1 in 5 people diagnosed with TB are not on treatment: a significant testing-treatment gap that is hampering the response.
• Stigma prevents people getting tested for TB and getting the treatment they need to get better. We must end stigma if we are to put a stop to TB.
• TB can be beaten: don’t smoke, drink alcohol or take drugs; finish all your medicine; cover your cough; open the windows to prevent the spread of TB.
• TB affects us all. Play your part in ending it: encourage testing, support people on treatment, raise awareness in your community.