I couldn’t believe my kids had tuberculosis 

Surayo's story

Obstacles to overcome

Six-year-old Bibisoleha might become a language teacher; eight-year-old Zainidin wants to be a police officer, soldier or pilot. They will have to overcome many obstacles to reach their dreams; one of these is tuberculosis (TB), which they are both being treated for.   

“I want my children to be healthy,” says Surayo, their mother, quietly and in tears in front of a unpretentious house in west Tajikistan, where she lives with her children and parents. Despite her precautions, her children were infected by her father.  

“I knew that my father was sick and because I was aware that the disease is transmissible I left my children at my husband’s house. I was afraid they might get infected. After three months, I brought my children to my parents’ house, where I live. Then MSF came and did X-rays and other tests. When they told me that my children had the disease, I couldn´t believe that they were sick,” Surayo says. 

Five pills a day

Zainidin and Bibisoleha started treatment at the same time, in January 2021, taking five pills a day for 11 months. This amount of medication would not be easy even for adults. Fortunately, their mother knew how important it was to encourage them to follow the treatment. Thankfully, the children will soon be completely cured and able to return to their normal lives. 

“When the children started to take the medication, I noticed that the colour of their cheeks changed. I realised that the drugs were helping them. They tolerated them well even though I was afraid of side-effects. On cold days, I gave them all of their medication in the morning, so they didn’t forget. Now <in July> they take one pill in the morning and the remaining four in the evening because it´s too hot in the morning,” says Surayo. 

Occasionally Zainidin and Bibisoleha refuse to take their pills, but Surayo always knows how to motivate them.  

“Sometimes they are grumpy, so I give them something to stimulate them – a coin or some food. I also told them that I will take them to a big market once they finish the treatment. I don´t have to promise them much, even small things make my children happy.”  

The Médecins Sans Frontières‎/Doctors Without Borders (MSF) team has helped Surayo’s family from the beginning.

They visit every three weeks, bringing food and occasionally toys for the children.

They are part of unique MSF programme that enables non-infectious children and families with TB to be treated at home instead of in a hospital.  

F-DOT Programme

“The family directly-observed treatment programme (the F-DOT programme) is really great because we can identify one primary caregiver who we can educate about TB treatment, the side-effects of medications, and how to cope and motivate their children,” explains Tanya Morshed, MSF mental health activity manager in Dushanbe, Tajikistan.

During their visit, the MSF team checks the medical condition of each family member and talks to them about their struggles.

Psychological support and health promotion

Psychosocial support and health promotion are vital as TB can have a significant impact on the daily lives of whole families. TB is still surrounded by many myths and people are often scared of those that are infected, avoiding them for fear of possible infection.

Children may lose friends and struggle not only with TB but also loneliness and stigma.

Fortunately, this has started to change in Tajikistan. 

“In the beginning, when our neighbours learned that my kids had TB, they didn´t let their children play with mine.

They told them not to come here.

But now they understand that my kids are not infectious and they can play together. My children themselves tell others that they are taking TB drugs.”

Surayo’s children are almost finished their treatment and they will soon be as healthy as they were before.

MSF has helped Surayo to find and enrol on to a computer skills training course.

She is now taking regular classes and hopes to find some job soon. When she is asked about her dreams she bursts into tears. She wants to live with her children and for them to be healthy.