Aksana, PH Belarus

For everything that I have in my life now, I am grateful to God …

I was born in a small Belarusian town. It happened so that fate brought me face to face with a rare, incurable diagnosis – congenital heart disease with PAH. I will not say that my childhood was different from other children; we did not have hospitals or doctors. I was allowed to attend sports sections, hiking and much more.

I graduated from school, college, got married and got pregnant, that’s when I learned all the symptoms of PAH. Severe pregnancy, thousands of questions and not a single answer. The doctors shrugged their shoulders, saying that the disease had not been studied, there were no cures. So I was alone. Then it seemed to me that I was the only one so “happy” in the whole country.

And now about the association: It all started with the fact that in 2012 in my city I learned about a girl named Lena with the same diagnosis. Already at that time I had two children – despite the threats of doctors, I gave birth to healthy sons at 28 and 31 weeks at enormous risks. This was my feat. My most desired victory over the circumstances, with which I have come to terms, accepted and learned to live. I am a creative person and my hobby smoothly developed into my main job – a wedding stylist and make-up artist. At the same time, I was dedicated to children, led my home life, went to yoga. I tried not to think about the disease, which periodically reminded of itself.

Lena’s was the opposite. The disease was severe. She suffered from shortness of breath, from lack of proper treatment. A common misfortune brought us together. We started looking for information on European sites and learned that there are associations for PAH and even treatments that can prolong life and alleviate symptoms of the disease. We had a dream for two – to open a similar association in Belarus and start helping people.

Fate decreed otherwise. After 2 years, Lena was gone. It was a difficult period in my life. Then I had to go myself. Thanks to the tremendous support of my family, in 2015 I opened an association for PAH patients and made Lena’s and my own dream come true. With volunteers, we collected information, translated articles, created a website and filled it with useful information. But that was not enough. People were dying, they needed treatment. We wrote letters to the Ministry of Health in the hope that the cry of the heart would be heard …

And now, a miracle! In 2019, the drugs Bosentan and Sildenophil were registered and are now freely available to patients with PAH. Also, successful operations on complex heart-lung transplant were performed. Many didn’t believe that the association would help with getting medicines. For many years I lived by one dream and never doubted that I could fulfill it, for myself, for the people, for my Lena.