An unplanned long journey full of surprises, which turns you into a wise giraffe.
Natalia, Bulgarian Society of Patients with Pulmonary Hypertension
I was born on 25 November before half a century in lovely Sofia, Bulgaria. I had master’s degree in Journalism and Mass Communication, as well as a Ph.D. in Political Science from Sofia University “St. Kliment Ohridski”. I started my career as a radio reporter and continued to work as a PR & marketing specialist for several Bulgarian ministries, banks and privet companies. My international career led me to Greece, Poland and Switzerland, where I worked as a regional manager. I was reborn in Vienna in 2016 as double lung transplant patient, who is blessed to live a normal active life for the last four years.
I am a founding member and current President of the Bulgarian Society of the patients with pulmonary hypertension. Also I am Board members of Bulgarian National Patients’ Organization since 2016, as well as spokesman, and Deputy Chair of the National Patient Organization (member of EPF). I became part of PHA Europe’s Board in 2016 as vice-treasurer. Since December 2019 I was elected for secretary. For two years I works hard also as a Deputy Chair of the Bulgarian association of the patients with respiratory failure and lung transplantation.Since May 2020, I am a patient representative (ePAG) in the European Lung Reference Network, which covers nine groups of rare lung diseases.
As a woman of words, I love writing and travelling to discover new magical places around the world and to find interesting stories. Sea and music have always been a part of my therapy. And positive thinking is an inseparable part of the fight for my life. It may sound strange but my hobby is to walk for kilometers. Some people consider this so ordinary but for me, after seven years of always wondering how and from where to pass, so that I would not remain breathless. Now, this is my most favourite hobby.
My travel in the world of pulmonary hypertension has been continuing for 11 years now. It started surprisingly and painfully in 2009. I passed through all hardships with which this disease would always surprise you. I often think why one illness found yet in 1891 by the German pathologist Ernst von Romberg remains incurable until now.
Fate is strange and unexplainable. When I was 38 years old, I found myself in a hospital for the first time in my life to learn that I had the incredible luck to have a rare disease, which makes you a princess that cannot move without getting short of breath and whose lips are always blue. My life turned upside down and for about six months I was lost. Then I told myself that I can handle that and that there are also other people like me.
And thus started my trip to the world of pulmonary hypertension. At present, I am a wise giraffe that looks down and enjoys every moment.
In 2012, with a group of friends, I founded the Bulgarian Society of Patients with Pulmonary Hypertension, of which I am currently chairman.
It was a great challenge but Dr.L. Dimitrov MD who was my physician in charge encouraged med to enter bravely the patients’ movement. I am not sure but probably he accurately estimated that by training my brain every day, I will not fall into depression, which inevitably overtakes people who have pulmonary hypertension.
From the distance of time, I know that the patients’ organizations are one of the main facilitators for newly diagnosed patients.