Brave – Miss SA’s struggle with tuberculosis

Posted on 13 December 2019

Tamaryn Green was diagnosed with Tuberculosis in her third year at university. She went on to become Miss South Africa in 2018 and is leading the fight against TB.

 

I remember it like it was yesterday. I woke up, got out of bed, and noticed a small lump in my neck that hadn’t been there before. I went to class, but it bugged me. I knew something wasn’t right.”

In mid-2015, Tamaryn Green was a medical student at the University of Cape Town. She trie hiding the swelling in her neck under scarves, but when it showed when it showed no signs of abating a few days later, she saw a doctor, who told her that her lymph node had become inflamed.

UCT’s Faculty of Health Sciences is staffed by a host of specialists, who ran a few tests – the results of which then came back inconclusive. She had the node removed and tested to determine the cause of the swelling, and those results turned her world upside down.

“It was the 23rd of June 2015 when I was diagnosed with pulmonary tuberculosis,” she says, “and just like that, my whole life changed.”

Pulmonary tuberculosis is an active infection of the lungs. This is the most common form of the disease, as it is highly contagious. If left untreated, over half of patients with active pulmonary tuberculosis will not survive. Tamaryn was 20 years old. “The first thing that popped into my mind was, Don’t tell anyone.”

Tamaryn was born in Worcester, outside Cape Town, and her parents moved the family to Paarl when she was nine years old. Her dream to become a doctor started early, and has never faded – even after she was crowned Miss South Africa in 2018.

Today, she is completing her medical studies in Cape Town, and she’s ready to talk about the disease that nearly derailed all of those dreams.

“Tuberculosis (TB) is a serious, infectious disease that occurs when a bacterium known as Mycobacterium tuberculosis spreads from one person to another through the air. It can spread far and wide when an infected person sneezes, coughs or even breathes,” explains Dr Dalene von Delft. These bacteria can persist in the air for hours, and if a person inhales them, they can cause an infection in the lungs without noticeable symptoms.

“Although this person may not develop symptoms of TB, they can be infected for years,” she says. “This is called latent tuberculosis – it is as though the bacteria are sleeping in the body. These bacteria can reactivate and spread to any part of the body, from head to toe. Once a person develops symptoms or signs of TB, it is called active tuberculosis.”

Dr Von Delft, who is a former member of staff in the Emergency Centre at Mediclinic Vergelegen, was diagnosed with multidrug-resistant (MDR) pulmonary TB in 2010, while working in a public hospital in SA, and underwent 19 months of treatment.

Once free of the disease, she and six of her colleagues were inspired to found TB Proof, a South African-based advocacy organisation that strives to provide platforms where TB-affected communities from diverse backgrounds can contribute to improving TB prevention and quality of care.

Why is this initiative so necessary?

Tuberculosis remains the leading cause of death in South Africa, she explains. According to a World Health Organization (WHO) report, 300 000 South Africans fell ill with TB in 2018 alone. Of those, 63 000 did not survive.

“TB has been the leading cause of death in SA for years, according to Stats SA,” she says. “Between 150 and 170 people with TB die every day. Yet this is a preventable and curable disease.” With Tamaryn’s diagnosis came a series of complications, and a sense of embarrassment. When she approached her general practitioner to have the swelling in her neck checked out, her doctors were immediately concerned.

TB patients report coughing, fever or night sweats, fatigue and a loss of appetite. Yet Tamaryn had none of these – and the doctors’ tests came back inconclusive. It was only when she had her lymph node surgically removed and tested that doctors were able to confirm a diagnosis. But Tamaryn’s health scare was just beginning.

Anti-tuberculous medications are usually prescribed for a duration of six months, and side effects – including skin rashes, nausea and changes in eyesight – are common. Tamaryn experienced a reaction in her liver. “I was vomiting regularly, and waking up disoriented, almost as if I was hallucinating,” she says. “I stopped my treatment, and had to take leave from studying. The doctors said I wasn’t contagious, and not coughing, so I could go to class, but the area in my neck continued to grow. It was the size of a golf ball and extremely painful.”

The site of the wound, where her lymph node had been removed, had developed a secondary infection, which required hospital visits to have the area drained every second day. Five months later, Tamaryn developed another complication: TB drug-induced hepatitis. “Tuberculosis came out of nowhere,” she says, “and it had a major impact on my life. I felt embarrassed to tell anyone other than my immediate family. For six months, I was taking medication every day, going to the clinic to have the site drained a few times a week – and I spent a lot of time avoiding the topic.”

Tamaryn was cured of the disease at the end of 2015. Yet it took until 2018, when she was crowned Miss SA, for her to speak publicly about her experience. “There is a lot of stigma around TB. I think a lot of people misunderstand it. We seem to think of it as a ‘dirty’ disease. That is understandable, and really a product of a lack of awareness. But for me, a medical student – I know how it works. I know the risk, I have the facts. Still, I said to myself, ‘No one must know’.”

Tamaryn and Dr Von Delft share something that puts them at greater-than-usual risk of contracting tuberculosis. “TB is classified as an occupational disease for health workers in South Africa,” explains Dr Von Delft. “Healthcare professionals in this country face three times the risk of acquiring TB, compared to the general population – and a six-times increased risk of developing drug-resistant TB.”

All health workers, including non-clinical staff and students, are at risk, she says. Accurately determining the number of health workers – including students – who develop TB is challenging due to stigma, which leads to underreporting.

Why? “In healthcare facilities, doctors, nurses and other healthcare professionals work to take care of many people who may be unwell with TB,” says Dr von Delft. “This means there is a high risk of circulating bacteria that can infect people. It is important that we prioritise making our healthcare facilities safe for health workers and patients, so that TB does not spread.”

Multidrug-resistant TB (MDR-TB) is a form of the disease that does not respond to traditional anti-TB medications, including the two most powerful, isoniazid and rifampicin. University medical students are particularly at risk: UCT’s Faculty of Health Sciences’ Student Development and Support Committee estimates that seven faculty students report contracting TB every year.

Like other forms of the disease, multidrug-resistant TB spreads via person-to-person transmission, but emerges primarily as a result of treatment mismanagement, says Dr Von Delft. “The duration of treatment depends on the resistance pattern of the bacteria and which part of the body is infected, but typically patients need to be on a course of medication for a minimum of six months, which may be extended to 18 to 24 months for those with MDR-TB.” That is a long time, says Tamaryn. “Adherence is essential but hard. When people begin the course of medication they feel terrible and they are motivated to take the four, massive tablets every day,” she explains. “But three months later they feel a lot better, and they forget, or they stop. Even as a medical student, I found it difficult.”

Sticking to the treatment plan is crucial to success in the fight against TB, but that’s not all. Understanding the risk, knowing the signs and having the courage to see a doctor when in doubt – this is how we will eliminate the disease, says Tamaryn.

Tamaryn says hiding her diagnosis may have caused more trauma than if she’d been open about it from the beginning. “When I became Miss SA, it was as if a lightbulb went on. So many people are going through this every day. I have a platform to help them.”

While the WHO states that SA has one of the highest incidences of TB in the world, the South African Department of Health warns that as many as 150 000 new cases may go undiagnosed every year. Knowledge is fuel in this fight.

Tamaryn was inspired to start an awareness campaign to tackle a few myths around the disease. “If you sit down in an airport and say to someone, ‘I have TB’, they will move away. You can show no symptoms, and there can be no chance of passing it on, but most people will think you’re dirty, or unhygienic. Just the word tuberculosis brings such baggage.”

Her message is simple: the best way to treat TB is to recognise that anyone can get it. “We can all fight it, and it can be beaten. There should be no stigma,” she says. “Here I am, Miss SA 2018. I had TB, and I beat it. So can you.”

 

Common signs and symptoms of active TB include:

▶ Coughing that lasts two or more weeks

▶ Fever

▶ Night sweats

▶ Unintentional weight loss

 

Less common symptoms include:

▶ Coughing up blood

▶ Chest pain, or pain with breathing or coughing

▶ Fatigue

▶ Chills

▶ Loss of appetite

 

If left untreated, TB can cause …

▶ Lung damage

▶ Spinal damage

▶ Joint damage

▶ Meningitis

▶ Liver or kidney problems

▶ Heart disorders

▶ Death