Fibrodysplasia Ossificans Progressiva

Fibrodysplasia Ossificans Progressiva  - is the correct diagnosis which I was diagnosed only when I was 13. Until 13 I didn’t know that I had Myositis Ossificans Progressiva (Fibrodysplasia). I just lived the life all children do, I didn't consider myself sick, no one told me I was a cripple or handicapped or someone special. My parents didn’t anyway differentiate me from other children. When I got sick, usually it were frequent colds, I was treated traditionally.
But when I was 4 I was treated from cancer. The cut my neck. I remember how they prepared me for the operation on my neck, how I had to lie on my stomach after it, them chemotherapy, procedure unit with the droppers…  It was a nightmare.
Once my father simply took me from the pediatric oncology – we went for a walk and then went home. My father was a rural doctor’s assistant and brought me to the rural hospital for some injections.
No one knew anything about fibrodysplasia: neither oncologists nor my parents. I underwent such procedures which are absolutely not allowed in my case: operation, injections, biopsy. FOP is often mixed up with cancer and it aggravates a patient’s condition. But I survived. I had repeated episodes (inflammations in my hand and leg) and exacerbations, often accompanied with severe pain syndrome. I was taken to wise women, persons with extrasensory perception? But all this was done out of despair, due to the ignorance of the exact diagnosis, lack of information. “Cancer” sounds so scary… I didn’t know I had cancer, no one told me about that, such topics were not discussed in our family. I just lived my life. When I was 13 I read my medical record.
Gradually I lost some moving functions. First when I was 7 I couldn’t comb my hair. FOP affected my neck and arms – I couldn’t raise my hands. Then it affected my spine.
I am the oldest in my family – I was responsible for my younger siblings and got punished for all of them. We were usually made to stand in the corners. I could stand in the corner or sit on the radiator (not hot of course) with the others for company – as the eldest. And this is also a very important pedagogic moment which I appreciated when I became an adult.
A child shouldn’t  feel  himself/herself defective, not like all children. I am thankful to my parents that I didn’t become a sick child for them. I have always helped about the house, in household chores. I had my own duties and cooperative work with the others. I washed the dishes, vacuumed carpets, swept the floor, dusted, fed the cow and the horse in the evening, hens and rabbits, met our cow and sheep from the herd, got rid of the weed in our garden, watered tomatoes and cucumbers, cabbige, in autumn I dug potatoes with the others, went down the cellar, nursed my younger siblings. I was brought up as a usual child. And I perceived myself as a personality.
No one had pity on me and no one limited me in my games or anything else. I was taken by the village children for company, we went to swim in the pond and dam, fished, went to the forest and grove, baked potatoes, gathered mushrooms and first flowers, somersaulted in the snow, jumped out of windows. My favorite occupation was walking on the ledge of our house and first-aid station. In our first-aid station one could move on to the ledge and walk down if you don’t  fall down on the corner of the house till the fence which separated the territory of the first-aid station and our house.  Our ledge was too narrow and we, on the contrary, went from the corner to the fence past our windows, clinging to everything we met on our way.
Only at the age of 13 when I had recurrent worsening I was diagnosed with FOP. Little people know about FOP and peculiarities of its course in Russia. This disease is fantastic – muscles turn into bones! It is hard to believe, but it’s a fact. I spent one month in the department of pediatric oncology, my father took me when I had a severe episode: I howled from the hell of a pain 3 days, I guess, parents thought that cancer has come back…
Oncologists examined me very thoroughly, but said that I wasn’t of their type. I felt myself offended and confused when during a regular round my attending medical doctor ignored me, he approached every neighbor there and I felt unwanted and unnecessary…
The oncologists took me to different hospitals and to different specialists. As a result my medical record had the following diagnosis: Munchmeyer's disease,   Myositis Ossificans Progressiva. I was prescribed ortofen and was given some nutrition recommendatios. And that’s all. Not a word about FOP. How can one live with that myositis? I had to live anyway. I could not attend school anymore (I went to the neighbouring village to the 5th form). My leg folded in the knee and I started stumping. 
I was in hospital half a month after the oncology in pediatric rheumahaematology of the regional hospital. My condition has deteriorated, my spine stopped bending. I couldn’t anymore get dressed and undressed. I had to throw down my legs to the floor from recumbency to get up from my bed, beds were very low there which has also deteriorated my condition, then I had to stand on my knees and leaning on my hands I had to raise myself into vertical position.
After discharging from the hospital I stumped about the house and the yard, when I was 14 I was completely taken to my bed. There was the heaviest episode – all my body got inflamed. First I was given a triad (injections  deteriorated the process), then they simply poured analgin and demidrol into my mouth, no one knew that injections are dangerous for those having FOP, that one cannot fall… how not to fall if your legs don’t bend at all? I fell very often… 
Gradually the episode of FOP has passed leaving me practically helpless. I could only lie at that time.
7 years later I was registered into Kemerovo orphanage for disabled. I undergone rehabilitation in the orphanage – I was given a wheelchair, I was taken to the balcony and then to the yard. My organism was supported with the medicines. I found friends, I started doing some creative work. FOP is progressing but under personnel’s supervision my life becomes more qualitative. But still a governmental establishment will never replace home. Nevertheless I don’t feel sorry for going to the orphanage. At home I didn’t have proper conditions for me being so violently ill. I didn’t have another choice.
I have been leaving 11 years in the orphanage. I grew up. I am a hostess to myself. Throughout these years I put many experiments on myself, successful and not, systematically and occasionally. Perhaps everything has its own time and God supports me at every stage of my life. I believe: everything will be as will be pleasing to God.
The 2nd Russian conference on FOP will be held in Moscow in the end of July 2015. A couple of years ago one couldn’t dream of  this meeting. Meeting with the worldknown doctors, individual check-up and recommendations, getting acquainted with the people of the same disease, news about research in the sphere of this disease. All this was incredible but became true.
Last year I was a participant of the 1st Russian conference on FOP, I hope that God will give me this opportunity this year too. FOP has united us, sick with FOP, and we became a family
April 23, 2015.
Olesya Radushko.