“I owe my life to my sister.”
Says the native Russian, who now lives and works as a scientist in Berlin.
It was a long way to get there: it was over 50 years ago and yet so close: Jana’s half-sister died in a small, remote Soviet hospital at the age of just five.
Only much later does the family understand the reason: the little girl had bilateral retinoblastoma.
A death sentence in this remote area of Russia at the time.
The little girl was diagnosed far too late, the disease was largely unknown and there was no treatment.

Nobody suspects that the father already had the disease.
Because the story that is told is a different one: Jana’s father had gotten a ball in his eye and when it subsequently turned white and his vision disappeared, he lost his eye.

Šiauliai, Lithuanian Soviet Socialist Republic, 1987: little Jana is born.
This time the father is forewarned.
Jana is examined, monitored from the start and when the retinoblastoma actually appears, she is treated at the renowned Moscow hospital RONC Russian Oncological Center – and saved.
Jana was only able to travel here for three years for follow-up examinations.
Then the borders close and Jana’s mother finds a specialist in Lithuania.

“As strange as it may sound, I grew up with the idea that my sister’s death saved my life and for a long time I hardly thought about it at all. It was just like that. A deeply buried thought – for decades. That has changed in the last few months – and today I know that I owe her my life, I was simply luckier than her. It’s a very emotional thought, it touches me, it makes me sad, but it’s just the way it is.”

The fact that she looks a little different to the other children sometimes causes Jana problems at school: “Nowadays, children are brought up to be open, tolerant and understanding – we didn’t have that in Russia: people were poor, had other problems, and I had to see how I could somehow manage that for myself.”
She usually succeeds.
It is sometimes more difficult to cope with the overprotective nature of her mother, who worries a lot.

Jana is 35 years old today.
Brown curly hair, a radiant, friendly face.
She lives in Berlin, has a doctorate in biology and works in a research institute at the Charité hospital.
Insects, her passion – fascination and relaxation at the same time.

And Jana has been married to Thomas for eight years.
They met on a Dutch course in Belgium, where she had lived and worked for seven years.
He came in and they clicked immediately.
And Jana quickly told Thomas about her RB on one of their first walks together: “I wanted it to be out in the open, I just told him. But I was also really scared that he would break up with me if I told him that my children could inherit my illness.”
But Thomas simply said: “Okay.”
And then: “Thank you for telling me – it doesn’t change anything.”
Happy ending.
Thomas and Jana love climbing, music, the mountains and the water, and as often as they can, they get out of Berlin and into the nature they love so much.

Jana has a full-body MRI once a year to take precautions: “What happens, happens. But I want to make sure that I’ve done everything I can. I accept the situation as it is and will find a way to deal with whatever comes.”

Jana will be involved in KAKS as an encourager.
Good, structured aftercare is particularly important to her.
This is why she has joined the KAKS aftercare group, where experiences are exchanged, important addresses and contacts are collected and publications are made available.
She is already impressed by how positive people diagnosed with RB are, what perspective they have on life and how strong they are.

Jana
Encourager