I am 30 years old. I have been bedridden for 14 of them. FOP is my life. Despite, I’m very physically limited, I don't feel I am disabled, but sometimes I really lack a good education, a database to be equal to other people. Periodically I can write and speak correctly, and sometimes, on the contrary I am like in vacuum and I have no words and clear sentences. At such moments I feel like a humble person, I work hard, slowly and persistently, using different methods, for example: learning English. It is difficult, for me, it is, but it's more than just learning the language for communication, this is the path to further development, new knowledge horizons, and a new level of development. I can't explain to others my thoughts, wishes sometimes. In my brain everything is clear and understandable.
I'm too shy. But I'm glad when I did not say anything too much; I am quick-tempered, but not with everybody. I try to bear things I do not like. Our Lord gives me the strength to endure and live. It is up to us to choose how to act in a given situation, what is good or bad. Every time this choice stands before us. We need to think it over and then it's easier to make the right decision. Do our fellow creatures no harm. It is terrible for me to be indifferent and dead in moral sense. I can be hard or tender, but I find it difficult to refuse when they ask me. I still live by the grace of Lord. Because I have a rare genetic disease, progressive fibrodysplasia . Every year it kills me, depriving the ability to move, turning into a statue.
I am like a time bomb. An explosion can occur because of the slightest impact or a virus. And bone tissue will start to wrap me up in a cocoon faster and faster. For 29 years of 30 I didn't know anything about this disease and the lives of people with my diagnosis, but the 29th year of my life has changed everything: now there are bunch of us, and we are together, we are United by the FOP and hope to Defeat this terrible disease.
Today abroad foreign specialists successfully make what they have to make against the FOP, giving us hope. And each of us has a personal war.
I prefer to know the enemy in the face, it is already an advantage. I know my struggle is endless-it is until the very end, it is worth living, looking at this sky, walking in the rain, loving, doing good, just to support each other. God gave me faith and inexhaustible optimism, perseverance. It really helps in my difficult fate. When I feel bad, and this is repeated over the years, more and more, I know that God is near. I am calm. I know that I will soon lose the ability to speak and my ears will lose hearing. It is inevitable. But I am calm. I am not afraid. God will be with me.
I am a member of the NGO "Living with FOP in Russia and a member of the international organization http://ifopa.org.
Our organization, "Living with FOP", sets specific goals:
It is to create a united health care center or more for example, in Moscow, St. Petersburg and Siberia. It is very important for us. Now, the most experienced FOP specialist in Russia examined only 15 people. And we have more than forty.
The urgent task is creating of the dental clinics to help FOP patients. A wrong medical intervention can cause complications, up to ossification of the jaws. In July of this year, our own organization and our relatives and friends held the first international meeting for patients from Russia and the former Soviet Union with doctors of the world level such as F. Kaplan of the U.S. and other Works. Morhart from Germany specializing in FOP.
Now we start preparing for a new meeting of patients and doctors, and our doctors also visit such meetings, one of our goals is to study the experience of foreign experts. I don't regret I have to live with FOP, it is my way. I love life. The soul has no restrictions of the body. The soul must be brought up and nurtured to love. I ask all parents who are faced with health problems of their children, to love their children, educate them as healthy individuals.
I hope that our society will Wake up and be friendly to your loved ones with any deviations from the General standards.
Inside - I am the same as everybody, I feel pain and joy, worry about family and friends, watch movies and listen to music, I live. I have many friends, God is generous to me. I write poetry and make journalism a little, I love walking. I'm happy!
Olesya Radushko