Tuberculosis (TB) is the world's top infectious killer today. It is airborne and can affect any one of us. Over 5 000 women, men and children still die each day from TB. The social and economic impacts are devastating, including poverty, stigma and discrimination. This disease is curable and preventable, yet global actions and investments fall far short of those needed to end the global TB epidemic.
These are the stories of TB survivors from around the world on their journey fighting and beating TB. These survivors have experienced the side effects of TB medication, the difficulties of undergoing treatment, the mental and psychological impact, and want to raise awareness about this disease, including the importance of getting tested and adhering to treatment.
Their voices provide important perspectives and are a powerful tool for advocacy to accelerate the TB response and reach all affected people with prevention and care.
Sophia, from Namibia
My name is Sophia, I am Namibian, 34 years old and a tuberculosis (TB) survivor.
A few years ago I moved to Windhoek to find a job. Soon after I realized that I wasn’t feeling well. My chest was hurting, I was coughing a lot and I had no appetite, so I went to the hospital where I had a sputum test. I was given medicines and I was sent home, but after a week I returned to the hospital because I was not getting any better.
Finally doctors sent me for an X-ray and shortly after they told me I had TB. I was shocked. I couldn’t understand how I had been infected and I told them that I didn’t drink or smoke. They explained to me that TB is airborne and it can affect any one of us, anywhere, and that I had to go to the nearest TB Directly-Observed Treatment, short-course (DOTs) centre to start the treatment.
I was scared when I found out that TB treatment usually lasts six months because it felt like a very long time. When I started medication, I vomited every time I swallowed a pill because I was taking them on an empty stomach. I had no appetite. At the clinic they gave me food, like porridge, which helped me take the medicines.
When I completed my TB treatment and was fully recovered, I decided to become a volunteer and went every day to the DOTs centre to cultivate the garden. After some time I was asked to become a DOTs centre supporter and for the past two years I have been helping TB patients with periodical house-to-house visits, to ensure that they complete their treatment. I also educate family members and their communities on TB.
Timpiyan, from Kenya
My name is Timpiyan and I survived zoonotic tuberculosis (TB), which is a form of TB transmitted from animals. I come from Kajiado County in Kenya, and I am originally from the Maasai tribe. Since 2016 I have been a member of the World Health Organization (WHO) Civil Society Task Force on TB.
In 2011, I realized that something was wrong when I started losing weight while my stomach was constantly swollen. After having a whole body scan at a Nairobi hospital, the doctors told me that they saw a big mass in my upper abdomen which had to be removed. It turned out to be pus, and when I woke up after a 7-hour surgery, the doctors told me that I had TB and that I had probably been infected by drinking unpasteurized milk or eating raw meat from cattle infected with TB.
My first reaction was utter shock: I had no idea that animals could have TB. Then I started worrying about my community: Maasai tribes have been eating raw meat and drinking blood and blood-milk mixtures from cattle for hundreds of years!
I realized the seriousness of the issue. At that moment I was ready to take the medicines to be cured but I also wanted to educate my people on how to prevent and fight TB. After 7 months of treatment I was finally able to stand and walk, and I started to inform my community about TB and the risks of getting it from infected cattle. Initially people didn't believe me, so I shared my experience. Eventually a few men revealed that they had lost someone in their family who had the same symptoms I had described. Gradually more and more people started listening to me.
When I talk to my communities, I tell them that TB is airborne and I explain the importance of ventilation. As a TB survivor and advocate, I also emphasize the importance of supporting TB patients: if you are not loved when taking medication you may give up on it.
In the past couple of years I’ve seen a lot of changes in these communities. Today, if people see someone coughing, they refer him to a hospital. They now know that TB is curable and preventable and that medication is freely provided by our government.
The only problem we face is X-rays. Unfortunately this service is not free of charge, and if a person with TB symptoms comes from a poor community, he or she will not be able to afford it. This is why I also ask my government to cover this important service.
As a TB survivor and advocate, my hope is to bring change, not only to the Kajiado County, but to the whole of Kenya.
Thandiwe, from Ethiopia
My name is Thandiwe, I am Ethiopian and I have a form of tuberculosis (TB) which is resistant to many different drugs – known as multidrug resistant TB, or MDR-TB.
It all started over six months ago. I was coughing a lot but I thought it was a simple case of flu. When I went to the hospital I was given antibiotics and syrup for the cough but after two weeks I had to go back because I didn’t see any improvement. I was sent to a clinic where my sputum was tested for tuberculosis (TB) and shortly after doctors confirmed that I had TB. I was then referred to the local health centre where I was prescribed treatment.
I believe that I contracted TB while working as ticket attendant on buses. Although we always try to keep the windows open, most passengers prefer to keep them closed because they worry about catching a cold, so buses are often poorly ventilated.
I immediately started the TB treatment but after two months I developed side effects from the medication, such as severe weakness and a yellow tinge to the whites of the eyes. I was then sent to another clinic, where I was diagnosed with MDR-TB and placed on a different treatment.
Since then I have received very good counselling, have learnt a lot about TB, and have begun to recover. I now know that TB is curable and preventable and I am hopeful for the future. After three months of treatment, the TB symptoms are gone, I only have some joint inflammation, but I was told to stay in the clinic until I am fully recovered.
The medical staff do a great job and I have excellent relationships with some of the personnel. I also made some friends among other TB patients; we always share and eat food together, and this has helped me emotionally. I also feel very lucky because as a civil servant I am covered by social protection and still receive my monthly salary even though I had to stop working six months ago. My salary will be covered for up to eight months. I am hoping to return to work again soon.
Theodor, from Namibia
My name is Theodor, I am 26 years old and I leave in Greenwell Matongo, Namibia.
Three months ago, a close friend noticed that I had been coughing for over a week and advised me to go to the hospital to get my sputum checked. When the results arrived, doctors told me that I had tuberculosis (TB).
I didn’t know anything about TB so they explained to me that it is an infectious disease that usually affects the lungs. I explained that I didn't know anyone with TB and they told me that because it is an airborne disease, I might have been infected by someone with TB on the bus or at work.
I was then sent to the closest clinic to my house where I started TB treatment. I feel lucky because the doctors are very good to me and to other patients.
I used to work for a local company that produces containers. But when I became ill it was very difficult to come to work because I felt so ill that I couldn’t stand. Eventually it got better and today, two months into treatment, I feel good.
I spoke to my colleagues and friends about my experience and told them that if they have any of the common TB symptoms, they should immediately go to the hospital to get tested for TB.
Ingrid, from South Africa
I am Ingrid and I had pre-extensively drug resistant tuberculosis (pre-XDR-TB), a form of TB caused by bacteria that are resistant to some of the most effective anti-TB drugs. After two years on TB treatment (including an injectable drug) I was cured.
I live in South Africa and I was working as a dietitian in the public sector when I got sick. I was diagnosed with ulcerative colitis – a chronic, inflammatory bowel disease that causes inflammation in the digestive tract – and I was treated with drugs to suppress my immune system and decrease the inflammation in my gut. Shortly thereafter I was diagnosed with pre-XDR-TB. I was hospitalised for 75 days. During this time, I developed liver failure and nearly died. I woke up from the coma and the doctor said it was a miracle. The doctor and the nursing staff who treated me in hospital were very kind and I was fortunate to have loving family and friends who encouraged me.
I remained weak when I left hospital and was struggling to cope with the injection and the pills that caused diarrhoea and vomiting. I found it hard to not have my freedom or the abilities I used to have, and felt very vulnerable and overwhelmed, like a massive wave had crashed over me. It made me think, “how do the poor and marginalised get through this?” I could not imagine doing this alone, without support from loved ones.
After leaving hospital I started working as an assistant to an inspiring academic who ignited in me a passion for research. I was blessed with lots of love and care from my family and friends and started exercising again. It felt like I was getting a new start; it felt good to enjoy things again and be excited about life!
I was declared cured in 2014. After having TB I now appreciate being healthy much more! TB changed my life; it has humbled as well as enriched me as a person, teaching me how much we have to be thankful for.
I feel I can now relate to the suffering of so many in South Africa who have TB and hope more will be done to not just treat the disease, but treat the person – providing nutritional, economical, practical and emotional support. I believe that could give people with TB the hope they need!
I am now part of TB Proof, an organisation that advocates for improved detection and treatment of TB, as well as breaking down the stigma attached to having TB. Our team is passionate about improving the outcomes for all patients with TB.