Samara works in the third sector with a children’s charity. Through her role she has worked with people experiencing homelessness. A few years ago, she contracted a disease that affected almost every aspect of her life, leading to an uphill battle with antimicrobial resistance (AMR) that has real-world implications. In this blog post, Samara shares her story about fighting antimicrobial-resistant tuberculosis, its hidden long-term consequences, and the importance of screening for persistent coughing.
I continued to have a cough for several months, but, like many people, I got through it. While on vacation with friends, I found myself coughing constantly, feeling hot, and struggling to get through each day. My friends made me realize something wasn’t right and their concerns led me to check it out myself when I got home.
What followed was a disappointing journey. I was treated for a chest infection and then asthma. The symptoms of tuberculosis can look similar to many other diseases, and unless you are healthy and at higher risk, tuberculosis is often one of the last things to consider.
I work all day with homeless people who have tuberculosis. This is because poor living conditions and limited access to health services often increase vulnerability to infection. When I discussed my work with this group, the doctor suggested testing for tuberculosis. Early diagnosis is more difficult because many people think of tuberculosis as a thing of the past.
At Christmas I needed an MRI scan and on Christmas Eve I got a call saying I needed to see a specialist the day after Boxing Day. I was extremely worried about what the scan results would be and at this point the possibility of tuberculosis still hadn’t crossed my mind. I was shocked when the order form said ‘TB inquiry’. My grandfather died of tuberculosis in Borneo before I was born, and my parents were shocked to hear that I might have tuberculosis.
The treatment took a toll on me. I was sleeping 20 hours a day, lost a lot of weight, and developed painful skin rashes. I was very fortunate to have a family who cared for me and an employer who gave me the time off I needed.
At my checkup we discovered that rifampicin was not effective. Afterwards, I was diagnosed with antimicrobial-resistant tuberculosis. This means that the antibiotics normally given to treat TB are not effective and do not improve the condition. Instead of the standard six months of treatment, I had to undergo 12 months of difficult medication. AMR doesn’t just mean another drug. This means longer treatment periods, more side effects, and a much more difficult journey back to health.
Even if tuberculosis is cured, long-term effects still remain. I suffered from tuberculosis for a long time and my lungs were slightly damaged. And I recently took part in a study on life expectancy in tuberculosis survivors, and the results were alarming. Although the potential for cardiovascular problems and long-term mental health implications is quite high, there are even more reasons to get a persistent cough checked.
The social impact of the fight against antibiotic-resistant tuberculosis was a huge burden for me as well. When AMR doubles your treatment time, you struggle with prolonged illness, isolation and uncertainty. Life moves on around you while you are stuck fighting a disease that was once easily treatable. It can be an uphill battle over the next 12 months, but it is very important to stick with your treatment to get well again.
Antimicrobial resistance means the tiny bacteria have learned to fight back, making treatment more complicated and causing greater harm to patients like me and my family.
My experience with tuberculosis has made me passionate about encouraging both doctors and patients to think about tuberculosis when people have persistent symptoms. AMR means we can’t afford to consider TB an afterthought. Every delay gives resistance more time to develop and spread.
My message is as follows: If you have a persistent cough, weight loss, or night sweats, don’t ignore your symptoms; tell your doctor and seek early treatment. And if you work with vulnerable people, make sure you suspect tuberculosis if they keep coughing. This is especially important because it can be much more difficult for them to get medical care and follow-up.
AMR has once again made tuberculosis a modern threat, and more infections will make it so. We all need to become more aware of how devastating AMR infections can be without effective medications.
