I am Liliya YARULLINA and I’m from Russia. I suffer from a rare cardiovascular disease that is known by not many people. This disorder is called Pulmonary Arterial Hypertension (PAH). I was diagnosed when I was 20 years old. Since then, my life has turned into a real fight for survival. I have gone through people’s indifference who could have helped me, and doctor’s negligence, as well as officials’ opposition.
As a result, I have achieved the proper behavior to me. I have had a full examination by the experts who not only heard about the disease, but also have a great clinical practice of the patients as me management. Only that way I have got an expensive and life essential therapy.
Now I’m safe, in stable state with all vitals being consistent. But I see people around me who cannot overcome the difficulties on the way to a good quality life… the people with the same diagnose – PAH, who have found themselves desperate to find the truth and the doctors’, administration and officials’ protection…
That is why on 16 April 2011 the Association of patients suffering from Pulmonary Hypertension ” Spasti i Sokhranit’ ” was founded. It comprises the patients as well as their dears and relatives. The organization is created in order to unite our forces, ideas, actions and possibilities. Since we are extremely vulnerable when we act separately. We help each other and together we get the proper behavior and real help to us from doctors and officials.
The problem of innovative medicine provision has been encountered by all PAH patients around Russia. With my personal example I want to say that the disease is not at all a sentence! We are sentenced by people, who do not want to deal with our treatment. But any of us has a right for a full examination and decent therapy. And if we stand for our right to a full and comfortable life together, we will win!
In our country there are not so many specialized medical centers and experts that can provide a timely examination, tell about the disease and select the effective therapy. And even if there is a proper clinic in your town, the first time you hear the diagnose, you are likely to turn out in a situation that will turn your life upside down forever.
The Association has a special information web-site that is created with patients’ and doctors’ efforts in order to each person who has encountered Pulmonary Hypertension, could find the answers to questions, unite with other patients and fight together for his/her proper health, future and life.