Conversation with Tolibjon Karimov

Tell us a little about yourself and your background

I am Tolibjon Karimov. I am 42 years old. I was born in the historical city of Kulob, Tajikistan. There I went to school and got a higher education. By education, I am a physics teacher. I am married and have three children. After graduation, I went to Russia every year to work. Unfortunately, I returned home from Russia in 2014 after my health deteriorated. It turned out that I had got tuberculosis there. Fortunately, I received treatment in my country and fully recovered. It was my illness that motivated me to work in the fight against tuberculosis. Now, I work as a case manager for the Stop TB partnership Tajikistan. I am very happy with my job because I can tell other people about my experience and my recovery story to help them overcome self-stigma.

Can you tell us about your experience with TB?

In 2014, I was working as a migrant labourer in Russia doing construction. Living conditions were not good there, 10-12 people lived in one room. There was no opportunity to eat hot food on time, I was exhausted from work, I saw others standing in line to prepare food. Many times, I slept hungry. My health deteriorated and I returned home. On the recommendation of a friend who worked in the same field, I took the test. The sputum analysis revealed that I had tuberculosis. I didn’t believe it and went through the analysis again. The second time the result was the same. At that time, I had no knowledge of tuberculosis at all. I didn’t even know the name of this disease in Tajik language. I thought that a person infected with this disease was about to die. I swore to my doctor and friend not to tell anyone about my illness. After talking with the doctor, I agreed to be sick and receive treatment. From the window of his room, the doctor showed me people with TB who were not well. The doctor told me that it’s good that I came when I did, as the disease is still new in my body. This would make my treatment easier.  For the first two months of treatment, I went to the doctor every day to take my medicine. After two months, I continued my treatment at home. I used to take my medicines from the hospital myself every week. As a result of proper treatment, I was completely cured.

How did you get involved with ELF and the UNITE4TB CAG?

As a person affected by TB, I worked as an assistant project manager at Stop TB Partnership Tajikistan. By the request of ERS in August 2021 to speak at the ERS Congress, I sent a video about how my organisation was helping people with TB in the COVID-19 pandemic by providing digital solutions. For example we gave them a mobile phone with internet access and an app that they could use to get information about TB, communicate with their clinician and others with the disease, and report any problems with their treatment. In doing this, I was guided by Clare Williams, Patient involvement and Engagement Coordinator from European Lung Foundation (ELF). In December 2021, Clare suggested that I, as someone with personal experience of tuberculosis, become a member of the Community Advisory Group (CAG) in UNITE4TB, an innovative project that is improving and speeding up treatment for TB.

What would you say to somebody thinking of getting involved in advocacy work?

As person affected by TB, I would like to say to anyone who is thinking of getting involved in community advocacy that you can protect the rights of people with TB by doing so.  Contribute to reducing self-stigma and all forms of TB stigma in society.  Most importantly, you can give people the confidence to recover and return to a healthy life, which many need; that is, you can provide emotional and psychological support to people with TB.  A person affected by tuberculosis, a member of their family or a person who has a desire to help can do this well.

Why is it important for people with lung conditions to get involved in EU projects?

People with lung conditions know the complexities of their condition better than others from their own experience.  Their opinions and suggestions can be useful for EU projects, and correctly implementing any assistance to patients, because they have experienced the sick days themselves. They know very well what kind of support someone with a lung condition needs: social assistance, psychological counselling or medical assistance.

What has been a highlight of being involved in the UNITE4TB CAG?

The highlight of participating in UNITE4TB as a CAG member is first of all meeting new people, visiting European countries.  Acquaintance with the scientific achievements of healthcare professionals, new methods and regimens of treatment, the use of digital technologies in supporting people with TB.

Anything else you would like to share?

In the fight against tuberculosis, I want to say that we should all reduce all types of stigma in society.  Because the main reason for late referral or non-treatment is stigma. In the treatment of tuberculosis, it is important to provide healthy food and psychological support along with anti-tuberculosis drugs.