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Iraq: “Having tuberculosis is not easy at all”
MSF has introduced an innovative treatment regimen for MDR-TB patients, involving the use of new drugs bedaquiline and delamanid. We hear from patients who have completed their treatment with the new regimen as well as currently enrolled ones, showcasing their experience and challenges with the disease and the treatment.
“Having tuberculosis is not easy at all” - Fatin
My name is Fatin, I am from Baghdad. I have three daughters and one son.
In July or August 2020, I was coughing, had continuous fever and was feeling very tired all the time. I went to seek medical advice for my condition and doctors referred me to the National Tuberculosis Institute.
There, they concluded that I had multidrug-resistant tuberculosis (MDR-TB). I wasn’t surprised when the test came back positive, I knew what tuberculosis (TB) was, and I was used to it.
My daughter had had TB before and I knew about the disease and its treatment. She had received her treatment from the institute and had completely recovered. The drug regimen she had been on consisted of oral pills as well as injections.
She had an injection every day for eight months. It was very difficult for her. She felt very weak and lost a lot of weight. She couldn’t study or go to school. We went to the institute every month for check-ups and to get her medications.
When I was diagnosed with MDR-TB, I didn’t have any injections. I was put on an all-oral drug regimen. At the beginning, I was very tired. I had to stay in bed all the time. The fever and the tiredness were very difficult on me.
Having TB is not easy at all.
On top of the physical suffering, I had to isolate from my family and wondered how I could perform home duties as a housewife. Thankfully, my older daughter helped me.
In the beginning of my isolation my two small daughters were very upset about it. They would cry frequently. They thought I was suffering from something very dangerous. But later, as the rest of the family talked to them, they understood that my isolation was for their own good.
In a way, my isolation was also easier than when my daughter got TB.
For me, it happened in the middle of the COVID-19 pandemic, so by default everyone was keeping a distance and isolating themselves. So, it was easy for me to not visit others and to stay home.
My husband is a taxi driver and our livelihood isn’t great. But when I visit the National Tuberculosis Institute, MSF provides me with a food basket and the transport money which helps me a lot during my treatment.
Without them, I’m not sure if I could’ve been able to afford the transportation from my home to the clinic and back.
Within a month-and-a-half after starting the medication, I started noticing a lot of difference. Now, my life is almost back to normal. I don’t have to isolate from [my family] anymore as I’m no longer infectious.
However, I still have to separate my personal things, like cutlery and dishes, and I have to avoid very close contact with them. But at least I can be around them again.
“This oral drug regimen is much better and has less side effects” - Hameeda
My name is Hameeda, I am 65 years old and I am from Baghdad (Iraq). I am a mother of six daughters and three sons.
The first time I was diagnosed with tuberculosis (TB) was in 2015. At that time, we didn’t know what was wrong with me. I was coughing, had night-time fever and I wasn’t feeling well.
My blood pressure and blood sugar were both high.
When I went to seek medical advice I was told that I had had a light stroke, and I was given treatments to better control my hypertension and blood sugar as well as medications for the stroke. But the coughing and the night-time fever didn’t go away.
I started noticing that I was coughing up sputum and my overall health was not improving. My son took me again to be seen by doctors, who then sent us to the National Tuberculosis Institute in Baghdad.
There, I was diagnosed with TB. The medical team at the institute prescribed injections for me that made me tired and weak.
When I first got the disease, the doctors told us that TB was an infectious disease and that I had to isolate from others. I stopped going out, visiting others or seeing anyone outside. I took my medications for about eight months, after which point the doctors told me that I was cured.
However, since then, I have had three relapses. The last one was at the beginning of 2020. I was told that it was a drug-resistant form of the disease this time around and I was put on a new drug regimen which involved taking pills.
During my previous infections, I was treated with daily injectable medications, which were giving me many side effects. For example, my body was itching a lot and I had developed bruise marks on my skin. But since I started taking oral tablets, I feel better.
The tablets still hurt my stomach, but they are much better and I have fewer side effects compared to the injections.
At the beginning of the treatment, I was very tired. I couldn’t walk or even move. My son was taking care of me and only with his help was I able to go to the National Tuberculosis Institute for check-ups.
He is the only provider for the family, and it was a hard time for him too. Sometimes he would have to take me to private clinics for consultations for my other chronic conditions, which would also need medications that he had to buy, and they were not cheap.
All of that prevented him from going to work and that in turn affected our livelihood.
But now, after almost 18 months of taking medication, I’m thankful I have finished my treatment and got rid of the disease and its hardships.
Now I am in a better health and I don’t need care from others.
“Before I was diagnosed with multidrug-resistant tuberculosis, I didn’t know at all what it was” - Abdulla
My name is Abdulla. I’m 30 years old and I’m from Baghdad (Iraq). I’m an English teacher and a private tutor. In 2019, I was diagnosed with multidrug-resistant tuberculosis (MDR-TB).
At that time, I had no idea what this disease was.
When the medical staff at the National Tuberculosis [Institute] in Baghdad explained it all to me, I was surprised to learn how serious tuberculosis (TB) was and how long it would take to treat it.
They informed me that I was eligible to be enrolled in a new treatment course that involved taking oral drugs, took a shorter amount of time and was better than the old regular treatment that consisted of injections.
I wanted to get treated as soon as possible and I was hopeful, so I agreed to it.
I started the treatment in 2020, which consisted of taking 14-18 pills every day. The reason why I was taking so many pills was because my treatment regimen was the short one, which is for 9 months.
There is also a longer regimen which lasts for 18 months. At the beginning, I also had to isolate myself and not mix with my family in order to not infect them.
In the first two weeks of my treatment, I was hopeful. I was telling myself that this was good and that I would quickly get better. But after that, I started losing my appetite.
I couldn’t eat any meals and the pills were becoming hard to swallow. I also couldn’t walk a lot as I would get tired fast. Sometimes, the pain in my body would be so strong that I would start crying.
I also couldn’t recall everything as I would experience memory gaps. Because of all this, I lost one of my main sources of income, as I couldn’t give private lessons anymore.
I was so upset, and I wanted to run away and just leave everything behind. My mother feared for me and worried that I would do something that I would regret later, so she kept all my documentation with her.
I had understood that I could die from this disease, and I was only hoping that God would forgive my sins.
Thankfully, the people from the clinic were constantly in contact with me, checking on me and making sure that I was taking my medication and wouldn’t quit the treatment.
They had told me it would be difficult from the start, but they really encouraged me and gave me the will to stick to it.
I wasn’t convinced at that time but now I realize that if it wasn’t for their optimism and encouragement, I would’ve given up on myself a long time ago.
I’m forever grateful for the support they gave me.
In the third month of my treatment, I slowly started getting better. I would go to the countryside and try to work out with friends and they would encourage me. That helped me a lot and I started feeling much better.
The pills were a bit easier to take and I started gaining some weight again. From that point on, things only improved.
Looking back, I think I was gifted another life and I’m grateful for everything that happened. I was a smoker and I was able to quit because of this disease. And before I knew I had TB, I was about to start studying for a master’s degree.
I left it because I wasn’t in good shape, but now, I’m feeling ready and I’m happy that I will be able to study again.
“I can’t wait to hold my children in my arms again” - Ibrahim
My name is Ibrahim Mohammed, I am 50 years old, and I am from Baghdad’s Sadr City. I am married and a father of eight children.
I first got infected with tuberculosis (TB) about three years ago. It took me a year of treatment to be cured from it. But after some time, I started feeling the same symptoms again and I knew that the TB had come back.
I went back to the National Tuberculosis Institute and they told me that this time, I had a drug-resistant form of TB. They prescribed me oral medications, unlike the drugs I had received the first time I had TB, which were injectables.
Following the doctor’s advice, I immediately isolated myself from my family and I moved to my brother’s empty house, which is right next to mine. I locked myself inside and I didn’t go out at all.
Not even to see my family. I only saw them from behind the windows. My family was sad and worried about me. They didn’t know much about the disease and how it would affect me.
Since then, I’ve spent my days at home. When I wake up, I put my bed in the sun to disinfect it and clean the house. Then, when it’s lunch time, my family brings me food. I don’t let them enter the house.
They leave the food outside for me and I go out to take it after they leave.
Before getting sick, I used to work as a porter, but due to my sickness I can’t work anymore. We can’t afford many things. We even had to cut the secondary power line from my home because we cannot pay for it anymore.
Most of the time, we can only afford food, and that’s mainly from the work of my son, who is a porter too.
On top of my multidrug-resistant tuberculosis (MDR-TB), I have chronic diseases as well. I take medications for hypertension, diabetes and heart disease. I must buy these medications on my own.
They cost me 30,000 IQDs (about 20 USD) per month, and sometimes I have to borrow money from others until I receive my social security salary to pay for it.
I feel weaker and I get tired quickly. But overall, I’m feeling good being on this treatment as it doesn’t have many negative side effects for me.
I hope to regain my full health so that I can go back to work and support my family again. I miss my children a lot.
I can only see them from behind the window when they play outside. I can’t wait to hold them in my arms again.
“This new tuberculosis treatment is a blessing compared to the old one” - Ihsan Ali
My name is Ihsan Ali and I’m 44 years old. I’m married and I have three boys and one girl. I live in the Hamidiya area, in Baghdad (Iraq).
I don’t have a steady job: sometimes I work as a construction worker and sometimes I borrow my friend’s taxi to work as a driver.
The first time I got tuberculosis (TB) was in 2014. I went to the hospital and they told me I had caught it.
Back then, I took the treatment for almost three months, but as soon as I got better, I stopped it.
A year later, the disease came back, even stronger than before. I was put again on mediation–both pills and injections. This time, I continued my treatment for the whole period it was prescribed, eight months in total. I was feeling much better.
But one day at the beginning of 2020, I was coming back from work and I suddenly felt lightheaded and tired. I didn’t expect it to be TB again, but my family suggested that I do a test just to be sure.
The test came back positive: I had had a relapse. This time it was multidrug-resistant tuberculosis (MDR-TB).
I isolated myself in my house and didn’t let anyone come near me. It wasn’t easy but it had to be done. I was then informed that there was a new treatment regimen, of 18 months duration and that wouldn’t involve injections.
I agreed immediately as didn’t want to go back to taking injections every day.
It’s been almost 10 months that I’m on this new drug regimen and I’m doing very well. It’s still a long way to recovery but hopefully I will overcome this. The pills that I am taking are a blessing compared to the injections.
The injections were painful, and I had to go to a local private clinic every day for them to be administered.
A month ago I got sick again: I had a fever, body ache and cough. I did a test and this time it was COVID-19. I had to isolate again and became a bit depressed. But I never lost hope, my belief was strong.
I trusted in God, the treatment, and the precaution measures I was taking. I was very sick for 20 days.
Although not fully recovered, I’m much better now thanks to God.
I’m the breadwinner in my family, and for most of the period when I was sick I couldn’t work. Thankfully friends and relatives stood by my side, supported me and helped my family. I’m thankful to God and to them.
Now, my only hope is for my health to get better so that I can work again, provide for my family and make up for all the time I was sick.
“Eventually, I learnt to deal with tuberculosis and with the treatment” - Rawabi
My name is Rawabi Mustafa, I am 37 years old and I am from Baghdad (Iraq).
In 2019, my health started deteriorating and I didn’t know what was wrong with me. I had pain in my chest, and I was becoming weaker. I couldn’t even sleep properly.
One day I smelled something and started to feel nauseous. I threw up and right after, I noticed that I was spitting blood. I was scared to see blood and I immediately went to the hospital.
The doctors did some initial checkups and gave me an appointment two days later. They examined me and requested some lab tests and radiographs. A few days later, I came back to get the results.
The doctors told me that I had tuberculosis (TB) and referred me to the National Tuberculosis Institute, where I was registered and put on a treatment plan.
I had to go to a primary healthcare centre in my neighbourhood to receive my medications on a regular basis. I was very strict on taking my medications on time and as prescribed.
Two-and-a-half months after starting the treatment, the doctors stopped the medication and told me that I was recovering. But after a while, I started feeling bad again. I decided to come back to the National Tuberculosis Institute for advice.
I met Dr Nadia and I explained my situation. She requested some lab tests and some radiographs. After the results came back, she told me I had gotten TB again and that this time it was a drug-resistant form of the disease.
She prescribed me a different treatment regimen, which was all oral: I didn’t have to have injections, just pills. It was reassuring for me when the doctor told me that there is a treatment for my condition, and I’m still on it now.
My life has changed now. I was a lot better before getting TB. The disease has made me feel tired all the time. I try to do some light exercises at home, but I can’t find the energy to do more.
TB has also affected my relationships with friends and others. I was afraid of infecting them. So, I stayed away from them and remained in isolation.
Even now that I am not infectious anymore and that I can be around others again, I still take precautions like avoiding prolonged or close contact, and I try to eat alone. I still don’t feel very good physically or mentally.
My whole life, I knew nothing about TB, maybe just the name of the disease. But nothing about what it is and how it affects people.
When I first got it, I was scared. But the more I learned about it, the less scared I became and eventually I learnt to deal with it and with the treatment.
My family was also scared. But everyone is supporting me regardless.
My advice for other patients is to be strict on their medication and to not be fearful.
If they take their medications as prescribed, they can get better.