TB: you could have it too

Two-thirds of South Africans are already infected with TB. No one is immune.

"If you want to avoid getting TB, don't breathe!" says Professor Nulda Beyers, director of clinical research at the Desmond Tutu TB Centre in Cape Town.

She says this only partly in jest. These days tuberculosis is so rife in South Africa that it's almost impossible to avoid exposure. In fact, according to the South African National Tuberculosis Association (Santa), it's suspected that at least 66% of our population is infected – but in most cases the bacterium is harboured in a dormant state so the carrier is unaware of the infection.

So two-thirds of South Africans have TB infection – that's double the already staggering global figure (about one-third). And this includes many people from privileged backgrounds. Although the poverty-stricken TB stereotype persists, says Beyers, no one should think they're immune to this debilitating and potentially fatal disease. Anyone can get it, as these personal testimonies show:

Rob Erasmus, manager of Cape Town-based Enviro Wildfire Services, discovered he had TB when his lung ruptured during a SCUBA diving course in the 1980s:

"I'd undergone the necessary medical examination for the course, which included a chest X-ray.

"I was diving with a large group on the wreck of the Mauri between Hout Bay and Llandudo.

"At the end of the dive, I experienced pain in my chest as I was surfacing, and signalled to the dive master that something wasn't right. He suggested I descend again and try to come up slower. This we did three or four times, but it didn't work. When my own air ran out, I had to have the half-empty SCUBA tanks brought down to me from those divers who'd finished their dive."

Eventually all the air tanks were empty, and Rob was forced to surface. This caused his lung to rupture and he had to be emergency airlifted to hospital.

"The tissue tests confirmed the left lung was badly infected with TB. I tried to get my hands on the original X-ray, but between the dive shop and the doctor it had 'mysteriously' vanished.

"I was not very happy with the doctor who'd done my diving medical exam. He's still a respected doctor in the commercial diving world, but I'm afraid he ranks minus 10 in my book."

Rob was very surprised by the diagnosis, and doesn't recall having had symptoms: "I was studying at Cape Tech at the time, and living a typical student life. So the late nights and parties resulted in occasionally feeling exhausted – if the TB was kicking in, it was masked by that."

"I don't know where I could've got it. I was in the employ of Cape Nature Conservation, and the previous year I'd been in contact with some sick wild animals as part of my work, so I might have picked it up then.

"It was awkward putting family, friends and classmates through the inconvenience of having to go to the clinic for a check. The good news is that no one else in my circle picked it up."

Apart from this, Rob says he's always been open about having had the disease. "I'm not embarrassed about it at all – maybe because I've been able to do a lot post-TB."

Rob went on to become a commercial diver and diving instructor, and became skilled in a range of other outdoor activities, from sailing to firefighting. "I'm now primarily in a management and investigative role in the wildfire sector, but I spent a good six seasons fighting fires and don't think my medical history had any negative impact on my ability."

Bronwyn Thompson works as a medical technologist in a pathology lab, but again, it's difficult to determine if that's where she contracted TB. As she points out: "You can be standing in a supermarket queue and someone coughs, and that might be enough to get infected."

Bronwyn, in her early twenties and athletic, also didn't seem "the type" to get TB. She continued to push herself, despite months of respiratory infections and other clues that something was wrong. "It was increasingly difficult to do full exercise routines. My lungs would burn and my legs would feel like lead."

"My boyfriend Tarren suggested I get tested for TB, but I had the ‘I can't get it' mindset. Also I've had asthma from childhood, so chest infections didn't seem that unusual. I didn't have typical symptoms like weight loss, and my cough was fairly mild. But you don't realise how long you've been coughing. In my case, it was easily six months."

The 2006 Aerobics-Gymnastics National Championships, in which Bronwyn took part, required lung function tests to prove to the Institute for Drug-Free Sports that she legitimately needed asthma medication. The results showed that her lung function was down – an indication of various respiratory conditions, including TB.

Eventually, after her doctors had tried changing her asthma pumps, and courses of antibiotics and hydrocortisone, they did a TB culture and chest X-ray – really, says Bronwyn, just to eliminate it as a possibility.

"When the doctor called with the news - fairly advanced TB, mostly in the left lung - I burst into tears. I was distraught, but also ridiculously ashamed.

"I had to tell my family and the group of interns I'd been working with. I was sure Tarren was infected (he wasn't) – just before the diagnosis we'd gone camping and spent days together in a tent! In the beginning I was really anxious I'd infect people, and did things like putting bars of disinfectant soap around the house.

"But I was never once made to feel rejected or isolated: when I told people they literally just put their arms around me.

"It's hard to stick with the treatment. The side effects get you down, as well as the fact of having to take all these drugs; my room looked like a pharmacy. At first you feel like everyone's staring at you at the clinic, when you head to the – clearly marked – TB section with your sputum bottle. But you get over that!

"These days I'm happy to talk about it – it's vital to get the word out. It's so unnecessary people die from what is essentially a curable disease, purely through stigma and lack of knowledge."

How do you catch TB?
When an infectious person coughs, sneezes, talks, laughs or spits, droplets containing Mycobacterium tuberculosis (the bacterium that causes TB), spray into the air. People nearby may inhale these bacteria and become infected.

But despite the fact that TB is mainly spread through the very air we breathe, transmission usually only occurs after substantial exposure to someone with active TB. In other words, infectious patients are much more likely to pass the bugs to family members, colleagues or people they interact with daily, than strangers or those they only see occasionally.

After inhaled TB bacteria have settled in your lungs, one of two things can happen:

Either your immune system manages to contain the bacteria and keep them in an inactive state, or they multiply, leading to the development of TB disease.

The bugs versus the body
Most infected people never actually develop active TB. They don't get sick, aren't infectious and may not even realise they're carrying the bacteria.

This is because the immune system controls the infection by forming "walls" around the bacteria: this is called inactive, dormant or latent TB.

But latent TB doesn't always stay that way. Ten in 100 people with latent TB will develop active TB in their lifetimes – most likely within the first two years of infection.

Active TB can also occur directly after infection if the bacteria overcome the body's immune defences and multiply. Some people develop TB disease within weeks of becoming infected, because their immune systems are simply too weak to stop the bacterial growth.

Other people with latent TB get sick later, when their immune systems become weakened through, for example, diseases or behaviours that cause immune suppression (most notably HIV, chemotherapy, poor nutrition or drug abuse).

Beyers says that there can also sometimes be a grey area between infection and disease. "Some people get infected and then only develop a very mild form of the disease – often with flu-like symptoms. So they may be unaware that they ever had it."

How does active TB manifest?
TB usually attacks the lungs and can destroy parts of the tissue, making it difficult to breathe. Less commonly, the bacteria spread to other parts of the body, including the digestive and urogenital tracts, bones, joints, nervous system, lymph nodes and skin.

It can even attack the brain as a deadly form of meningitis, or break down vertebrae, causing sufferers to become humpbacked. A rare form of TB has also been known to disfigure the soft tissue of the face.

Tests, treatments and deterrents
The standard initial diagnostic test for TB infection is the tuberculin skin test: a small amount of testing fluid, called tuberculin, is injected under the skin of the arm and a small lump at the injection site usually indicates TB infection. Diagnosis of TB disease requires further tests such as a chest X-rays and sputum culture.

But TB is a complicated disease that's often shrouded in shame. One of the biggest myths is that infected people need to be avoided or isolated for months. The result is that many people are afraid to get tested or make their diagnosis known.

"Some people hide their TB status because they think they'll lose their jobs if they come clean," says Professor Umesh Lalloo, head of the respiratory unit at the University of KwaZulu-Natal and the Nkosi Albert Luthuli Central Hospital.

"But if treatment is carried out correctly, a person with active TB will be non-infectious two weeks after starting treatment."

Yes, TB is a highly dangerous disease, but it can be treated effectively. One caveat: the drug regimen (typically a six- to nine-month course) must be strictly adhered to. Many people stop taking their medication because they start feeling better or experience unpleasant side effects.

Tragically, this results in the development of drug-resistant strains of TB, which are making the epidemic much harder to control.

TB gets extreme
South Africans were shocked to learn of a frightening form of TB called XDR-(extreme drug-resistant) TB. Prof. Lalloo identified the XDR strain through research in the Tugela Ferry area. Further investigation has shown that XDR is cropping up all over South Africa and across the globe.

What makes XDR so virulent? "If you're extremely resistant to TB drugs, there are very few treatment options," says Lalloo. "And if someone is HIV-positive as well there's an almost 100% mortality rate."

Lalloo says South Africa's TB infection rate has almost doubled in the last eight years: "In 2000 we reported about 500 new cases in every 100 000 people. This has grown to about 1 000 new cases per 100 000. Even more worrying is the fact that SA's statistics don't compare well with those of neighbouring countries, even though we are – on paper at least – one of the best resourced countries in Africa."

Ideally, Lalloo says, there should be systems in place to identify at least 80% of TB infections. "Of that 80%, we must be able to cure at least 80% of cases if we want to prevent the spread of XDR-TB."

Should you get tested?
A TB test is strongly recommended in any of the following cases:

• You've spent time recently (i.e. in the last two years) with someone who has TB or you work in an environment where rates of infectious TB are very high (e.g. large healthcare institutions).
• You are HIV-positive, or have another condition that causes immune suppression. If someone with latent TB contracts HIV, the risk of developing active TB rises from 10% during his or her lifetime to 10% a year.
• You develop symptoms that suggest TB – such as a persistent cough, coughing up sputum or blood, chest pain, fatigue, unexplained loss of weight or appetite, chills and fever, night sweats and shortness of breath or wheezing.
• Other less common symptoms include joint pain, diarrhoea, loss of hearing, a persistent lump or lesion and swollen fingers or toes.
• If you are due to undergo chemotherapy, your doctors may advise a TB test, and treatment for latent TB if you test positive.
• Children under five are at high risk of developing TB disease once they have been infected. For example, if your child's teacher or childminder has been diagnosed with TB, it's a good idea to have your child tested for TB.

In all of these high-risk cases, a positive TB test will require treatment. Even if your diagnosis is latent TB, you should still take a prophylactic course of drugs to prevent the development of active TB.

Testing and treatment for latent TB is not considered necessary for people who do not fall into the risk categories mentioned here.

As always, prevention is better than cure
To help protect yourself from contracting TB you need to follow a healthy lifestyle and support your immune system with good nutrition, regular exercise and sufficient rest. To further improve your chances: know your HIV status and don't smoke.

Tobacco smoke increases the risk of becoming infected in the first place, of latent TB becoming TB disease, and of TB being fatal. To make matters worse, second-hand smoke is also linked to an increased risk of infection in children.

Can you protect your child against TB?
It's essential that babies receive the Bacillus Calmette-Guérin (BCG) vaccination, because it prevents serious types of TB such as TB meningitis or disseminated TB (which spreads to other organs and limbs) in children under two, says Professor Willem Hanekom, laboratory director of the South African TB Vaccine Initiative at the University of Cape Town.

"This vaccine is 80% successful and is one of the safest vaccines." Currently BCG is the only TB vaccine in the world for the prevention of the disease.

Unfortunately it doesn't work for adults, Hanekom says. "It's also not effective against pulmonary TB, the most common type of TB."

- Adapted March 2012, by Olivia Rose-Innes, from an article that originally appeared YOU Pulse / Huisgenoot-POLS. The article won the 2010 Lilly MDR-TB Partnership/Red Cross Annual TB Media Award.

Photo credits: Photo of Rob Erasmus by Jono Woodhouse; photo of Bronwyn Thompson by Olivia Rose-Innes

Read more:

Fully sick rapper: While under quarantine for MDR-TB, Christiaan van Vuuren started rapping and produced his own YouTube videos of his experiences.

Take a look at this moving photographic essay of TB in SA, check out these famous TB patients, and see how TB develops drug resistance.