Let's never forget: it's time to end TB

Hi, I’m Ksenia. And I had TB.

I was 20 years old when I got my diagnosis.  I did not feel sick, only in the morning it was difficult for me to wake up.  I scolded myself for laziness. But for two years the disease had already perforated my lungs. I got my diagnosis in 2008, after which I spent almost two more years in the hospital, underwent two surgeries, lost 5 fragments of ribs and drank more than three thousand pills. But that was not the worst.  The worst thing is that nobody spoke about tuberculosis, especially those who had it.

Nobody speaks about TB? Nobody cares?

But I care. All patients need someone who can speak to them like a friend. And I became this friend. Many women in my hospital did not tell their husbands that they had tuberculosis. They were afraid they would be kicked out of the house. They said “no one needs a sick wife”. This was my introduction to stigma.

From TB, I found my strength

I was a photographer and could not imagine my life without photography. My struggle with TB became the struggle for my life. I needed two surgeries, which made me very nervous. After the first one, I could not control my right hand. This photo is the first after surgery, maybe a month and a half had passed.  You can see the bandages around my chest. I used my left hand to put the camera on a tripod and made my portrait.  In the photo, I am showing my tongue and smiling. That means I'm not giving up.

From TB, I found my community

Back in the hospital, I started a blog about TB.  When I returned to Moscow to study, I began an online support group for TB patients. I addressed hundreds of questions, hundreds of difficult situations, many fears.  Over the years, we have made this a place of support for many people.  Now everyone who writes in can get the advice of doctors, consultants, psychologists. Together with Paulina Sinyatkina, who like me had TB and could not leave it behind, I wrote a book from patient to patient called “You and Tuberculosis”.  Today it’s been translated in 11 languages. With the support of WHO, we were able to tour 7 cities with the highest burden of TB in Russia.  We went to hospitals, talked with doctors and people with TB.  We lectured for the urban population to crash the stigma.  One of the lectures was held in an Irish pub! Later, Paulina, me and another 20 people from Eastern Europe and Central Asia became co-founders of the TBpeople network.  Now the network has become global and has representatives on almost all continents of the world.  With such a team, I feel that I will be supported even in the most difficult moments.

I want to talk about one of these difficult moments

On 14 October 2018, I lost a good friend.  Her name was Natasha. She was only 28. It was extremely Drug-Resistant TB. Natasha had a sense of aesthetics. She fought for herself from the age of 17 and helped others with TB.  We talked online for 4 years and dreamed of meeting in person, and exchanged music and photos.  I found out about her death by accident.  An unknown girl wrote to me that they are raising money for Natasha’s funeral.  I thought they were scammers.  I wrote to her: "Natasha, they write to me that you died?"... but she never answered.

In memory of Natasha and other people who died due to tuberculosis, on 14 October 2019 I marked the first TB memory day.  I hope more people will support me in 2020. 

For Natasha, who loved to look at the stars

In 2017, WHO estimated that 1.6 million people died all over the world from TB. I want to remember everyone who died from TB. I began to count and mark each person as a dot on the fabric.  I call it ‘Memory Canvas’.  I will collect 1600 squares of fabric. On each square, 1000 people are marked by dots. In all, 1 600 000 dots - one for each person who lost their life. When we finish, we will have a huge canvas where everyone will be remembered.  

To emphasize that we are all human, many of the squares are dedicated to what these people loved or could love. My first piece was for Natasha and 999 other people, who loved to look at the stars.

Stigma must be destroyed. We must remember everyone who left

After Natasha’s death, I wanted to publish her story so that people would know about her, that she was gone. Out of this idea, I created TBmemorial in honour of people who died of TB.  Our main task is to tell life’s maximum. We do it to show what kind of people they were – what kind of things they liked, what kind of music they listened to and what their favorite movies were; if they liked fishing or dreamt of a flight to space.

If you want, you can create the Memory Canvas with me.  You can write to me about loved ones that you lost due to tuberculosis. Tag your stories on social media with #tbmemo. I ask you - let's fight TB together.  This disease has been ruining our lives for too long.