I Lived With TB. Here’s What My Life Was Like.

Simphiwe holds his medication, he takes up to 26 pills a day to treat XDR-TB. Here he holds his morning selection, which includes delamanid, one of the newest DR-TB drugs, which Simphiwe is taking for the first time today. Simphiwe Zwide, 43 years, lives in a one-bedroom house with his wife, Nomonde Tyala, and children in Kuyasa, Khayelitsha. Simphiwe was first diagnosed with MDR-TB in 2011. He completed six months of treatment, but when he learned that he had pre-XDR-TB and would need even more treatment, he lost heart and returned to work. In June 2016, he presented back to his Khayelistha clinic as he had fallen ill again. This time test results showed he had XDR-TB. He took his first delamanid tablets on 12 October, as part of a strengthened regimen for XDR-TB. Simphiwe’s current regimen: Delamanid, bedaquiline, linezolid, levofloxacin, terizidone, clofazimine, ethionamide Simphiwe Zwide: “In 2011, my wife had TB and they admitted her into Jooste District Hospital. I visited her for over a week. When she came out of hospital, I fell sick. I couldn’t eat, my body was painful, my throat was sore – I thought I had a virus. My wife tried to cook – sour milk and maize meal. I couldn’t swallow. I had to drink many cups of water. I was sweating – I couldn’t walk even couple of metres. My wife was very supportive of me. She would leave me taxi money and go and stand in the hospital queue for me from 5am. I started to feel my health returning and I felt like I could work again. I’m the breadwinner, and we were all suffering. I was the only one who could work for my family. I was taking clofazamine injections which meant that I had to attend the clinic every day and this was preventing me from finding a job. I was between Johannesburg and Cape Town looking for work between 2012 to the end of 2016. Then in January 2016, I started to get sick again. I couldn’t work like I’m used to. I came back to Khayelitsha, now I’m here at Kuyasa clinic g

Tuberculosis is among South Africa’s most lethal diseases, and those living with it often face stigma and victimisation due to lack of knowledge. MAKGOSI LETIMILE tells of her story living with TB meningitis.

When I was diagnosed with TB meningitis in 2016, it was like a bolt from the blue.
I thought I knew what TB was, so when I started getting weaker and exhausted and having terrible abdominal pains, it didn’t occur to me that it was TB. I didn’t have a cough or night sweats, so I assumed that it was just a fever that I couldn’t shake.

I was living in Khayelitsha at the time and went to my local clinic. Despite having symptoms like being unable to urinate, the nurse didn’t do a TB test. I became really ill that night and had to be rushed to the hospital. After a week in Khayelitsha Hospital, I was told that I had TB meningitis. I had no idea that I would end up losing the use of my legs and have to use a wheelchair.

I had no idea what it meant. I had heard of meningitis but never that I could get it with TB. I had to take 64 pills a day at the beginning of my treatment, which was very difficult. I spent six months in rehab where I was taught how to live with the disability, basic food-making skills and hygiene care.

When I was first admitted to rehab, a team of people was assigned to work with me because of the brain damage that the meningitis had caused; an occupational therapist had to teach me the alphabet, words, and how to hold a pen again.

A team of physiotherapists helped me to use whatever muscle could function, a psychologist helped me to adjust to this new existence, a TB specialist doctor addressed my clinical care, and a social worker helped me to apply for a grant and supported my family in adjusting to my needs.

I’ve been in the wheelchair for 25 months now and am finally getting stronger. Just this week, I walked up a flight of stairs (with a little assistance). My next goal is to walk again. In my pre-TB days, I never thought that such a simple action would be so difficult, or bring me so much pride.

Becoming disabled has shown me how tough it is for people to bounce back from a life-changing illness. I am unemployed and have been since February 2016. Most employers are not prepared to make accommodation for disabled people, and many buildings are simply not accessible for wheelchair users.

I now understand that one of the major factors leading to my TB infection was my living conditions. Housing in Khayelitsha is cramped, overcrowded and polluted. It is very easy to contract TB because small houses are not properly ventilated and people cannot keep their windows open because the crime rate is so high. All it takes to contract TB is one infected person sneezing in a crowded taxi.

There is a reason why so many poor people contract TB: our socio-economic context makes us prone to infection. It was not an accident that the majority of people who died from listeriosis were poor, our living conditions make it harder to fight off disease. South Africa is one of the most unequal societies in the world, and it’s unfortunate that the face of poverty in this country also happens to be black.

It is necessary to eat before taking TB tablets, as one cannot take them on an empty stomach. Unfortunately, many TB patients cannot afford three meals a day, so healthy eating is not possible for everyone. Even though people tend to associate TB with HIV, this is not always the case. Now that we have free antiretroviral treatment and its only one pill a day, we have seen the stigma about TB increase.

Most people now know you can’t contract HIV by touching or sharing utensils. But because TB is highly infectious and the treatment regime so tough, the stigma is increasing. Some people have been shunned by their own family members, and given special utensils that only they can use, they are excluded from social events.

TB is easily treatable if caught in time, and most patients need a skin test which is not invasive, is painless and is administered free of charge. Most importantly, getting treatment reduces the risk of infecting others. Our clinics have started peer support groups and “buddy systems”, enabling patients to share their experiences with others facing the same problems and easing the journey to health.

This type of support helps, even when struggling with adhering to medication. People with TB are more likely stop taking treatment if there is nobody to hold their hand during trying times.
We need all hands on board, from society to churches, clubs and each other, to make sure that TB doesn’t become another crisis that we try to manage too late. Slogans about TB and stickers once a year are not sufficient. Our health depends on more effort to re-educate ourselves and others. Let’s have these conversations without fear.

Fact box

One quarter (25%) of the world’s population are infected by TB bacteria. Many people do not get the care they need, which is why the disease continues to spread. The CDC (Centers for Disease Control and Prevention) is an implementing agency of the U.S. President’s Emergency Plan for AIDS Relief, working with partners to drive progress in HIV and TB prevention and treatment.

HIV/AIDS and TB are the world’s two most deadly infectious diseases and CDC is tackling them together for greatest impact. New data adds to findings released in the past year, which show that five African countries are approaching control of their HIV epidemics.

Simple tips to prevent the spread of TB:

  • Cover your mouth with a tissue if you cough or sneeze.
  • Wash your hands after sneezing or coughing.
  • Keep rooms well ventilated, fresh air helps to disperse TB bacteria.
    Some symptoms indicate that you should be tested for TB, such as persistent cough (for longer than one month), feeling feverish, night sweats, struggling to breathe, losing appetite, and feeling very weak.

For more information on how to protect yourself and your community, see here.

Featured image by Simphiwe Zwide