Extensively drug-resistant TB nearly killed me: The impact of AMR
My Story: Ingrid Schoeman
My name is Ingrid Schoeman. In 2012, tuberculosis (TB) nearly killed me. I was working as a dietitian in a public hospital in the Eastern Cape province of South Africa when I got sick.
I was admitted to the Intensive Care Unit (ICU), and a lung biopsy confirmed that I had extensively drug-resistant TB (XDR-TB). I was scared, because working in the hospital I had seen many people who did not survive XDR-TB.
The TB medication was so toxic that I developed liver failure and went into a coma. The physician (the kindest doctor in the world) phoned my family to get on the next flight and come say their goodbyes. Fortunately, after a couple of days, I woke up.
Tuberculosis (TB) is life-changing
Everything changed. I went from being a dietitian to a patient, from being free to completely bedridden. I had a chest drain, a nasogastric tube in my nose for feeding, and an abdominal tap to drain all the liquid in my abdomen from the liver failure. The nausea, vomiting, and diarrhoea felt like it would never end. I lost more than 20 kg during this time; my hair fell out, and my eye colour changed. I could hardly recognise myself in the mirror. I was hospitalised for 75 days, and this was one of the most difficult experiences of my life.
During this time, I was overwhelmed by kindness and support from family, friends, health workers, and hospital staff. They played music for me, teased me and made me laugh, sang for me, and encouraged me. I received excellent clinical care and had financial security. Despite all this, I felt overwhelmed and wanted to give up. This made me think: how do majority of people in South Africa, who do not even have food on the table to eat, get through this?
What is Tuberculosis and what causes drug-resistance?
TB is caused by bacteria called Mycobacterium tuberculosis that can spread through the air. Therefore, TB can infect anyone who breathes. Yet, there is a stigma around getting sick with TB that we do not see for other diseases like COVID-19. TB primarily affects the lungs but can also affect other parts of the body, such as the brain, kidneys, or spine. TB spreads through the air when an infected person coughs, sneezes, or talks, while releasing tiny droplets containing the bacteria into the air. The treatment of TB typically involves a combination of several antibiotics taken over a specific period. The goal of treatment is to eliminate the bacteria causing TB from the body and prevent the development of drug-resistant strains.
Drug resistance in TB refers to the phenomenon where the bacteria causing tuberculosis to become resistant to the effects of the drugs used to treat the infection. This occurs when the bacteria mutate and develop mechanisms to withstand the medicines that are meant to treat them.
There are two main types of drug-resistant TB:
Multi-Drug Resistant TB (MDR-TB): This occurs when the bacteria become resistant to at least two of the most potent first-line medicines used to treat TB – isoniazid and rifampicin. MDR-TB is more difficult to treat and requires a longer and more complex treatment regimen with second-line medicines, which often have more side effects.
Extensively Drug-Resistant TB (XDR-TB): This is a more severe form of resistance. XDR-TB occurs when the bacteria are resistant not only to isoniazid and rifampicin but also to fluoroquinolones and at least one of the injectable second-line drugs.
Drug resistance in TB can arise due to several factors, including:
Transmission of drug-resistant strains: If drug-resistant strains of TB are transmitted from person to person, the problem can spread within communities and beyond. You can be infected with a drug-resistant TB strain without having had TB before.
Incomplete treatment: Not taking the full course of prescribed medications can lead to the survival of drug-resistant bacteria. Therefore, each person diagnosed with TB needs to receive adequate counselling and support. Screening for mental health issues and substance use is important so that people could be referred for additional support to a psychologist, dietitian, social worker and other support e.g., peer support groups.
Inadequate healthcare infrastructure: Limited access to quality healthcare and diagnostic tools can lead to delayed or incorrect diagnoses and inappropriate treatment. Antibiotics may be prescribed unnecessarily or incorrectly, contributing to the development of drug-resistant strains.
Preventing and managing drug-resistant TB requires a comprehensive approach that includes accurate diagnosis, appropriate treatment regimens, patient education, and efforts to improve healthcare infrastructure and access to care.
My future mission and work
I was fortunate to join TB Proof, a TB advocacy organisation consisting of people affected by TB. Their passion to advocate for high-quality TB care for all people, free from stigma and discrimination, and a strong focus on seeing TB policies being implemented to benefit communities, inspired me. TB Proof’s vision is to combine personal stories and scientific evidence to end TB. Our mission is to build advocacy capacity, mobilise resources for TB, reduce TB stigma, make health facilities safe, and pursue health equity.
TB enriched me as a person, but most people are not so lucky. Urgent action is needed to advocate about Antimicrobial Resistance (AMR) so that we can address drug-resistant TB. AMR has a significant impact on TB and the efforts to control and treat this infectious disease.
Ingrid Schoeman
Ingrid Schoeman is a TB advocate and Director of Advocacy and Strategy at TB Proof South Africa. After her own experience of having extensively drug-resistant TB (XDR-TB), she is passionate about advocating for high-quality TB care for all, free from stigma and discrimination. Read more about TB Proof at www.tbproof.org.