"I know how to live with PH in our country in my own skin: you think you're alone, the medication for you costs half the price of a good car and the government not always wants to provide you with it, you have to fight for every breath...."
Hello to everybody!
My name is Yana. I’m from Russia. I was born in Birobidzhan (Jewish Autonomous Region) in 1986. From my birth doctors couldn’t understand what was wrong with me. I was too small; I couldn’t eat by myself, so my parents had to feed me through nose by pipette. I had slept for 40 minutes a day and the rest of the time I was crying. When I was six months old doctors found a heart defect, but they told my parents, that it was not dangerous and it would heal by itself. But they were wrong. I became worse and worse. Then, my parents decided to get me to Kiev to the heart center for examination. There they were told that it’s too late to cure the heart defect, because the pressure in the lung artery was too high. They were shocked. But they did another operation; they closed the arterial canal and made aortarctia. That’s all. The heart defect wasn’t eliminated…
So, as you understand, I don’t know another condition of my body. I don’t know how to go fast or run and not feel breathless, and I don’t know how to get upstairs and not to stop. My life is quite calm. I’m trying not to rush. PH is part of me. Part of my life.
Many years I lived in an informational isolation. The only thing I knew about myself is how my diagnosis sounded, and my disease is very rare. Doctors in our hospital didn’t know what to do with me. No treatment, lots of restriction -that was my life.
In spite of all these troubles I successfully finished school, then I went to higher education, and recently I moved to the big city – Saint Petersburg. Now, I’m working as a coordinator of the one and only Russian informational portal of PH. And I think I found my place in this world. I want to do my best for people with PH, to share new information with them and try to organize support events. I know how to live with PH in our country in my own skin: you think you’re alone, the medication for you costs half the price of a good car and the government not always wants to provide you with it, you have to fight for every breath…. But I believe that there is nothing impossible in the world. Everything you need is HOPE!
Thanks for your attention. My e-mail: firstname.lastname@example.org