The story of Elena
I tell you my story life .
My name is Elena Pomana from Romania. I’m 27 years old and I’m suffering from a rare disease called F.O.P. (Fibrodysplasia Ossificans Progressiva) in which my muscles calcify into bone. Although my disease is a rare and tough one, I never give up having a smile on my face.I have a progressive illness which affects my life. www.ifopa.org
Despite my illness I have finished a high school, two universities, and currently I’m doing my masters, from my wish to evolve professionally.
In order for me to succeed I need to be in the position to start this. Even if the illness had made struggle a lot during my years I had never stopped fighting. At school I was writing with the notebook into my hands, think that I do also now. Why am I telling you all of this? Because I want you to understand that I’m a fighter who’s facing her destiny.
My ambition is to change in good the life of disable people, and I truly believe that no one can judge for that.
In order for me to succeed I need to be in the position to start this. Even if the illness had made struggle a lot during my years I had never stopped fighting. At school I was writing with the notebook into my hands, think that I do also now.
I would much wish to be the liaison between the politic and the disable people, so that I can represent all of us, because I know how much struggle you need and how many obstacle you can encounter in a country like Romania where we are not accepted as normal people and we always have to face the ignorance of the society and the refusal of the authorities to help us as it is needed.
I exposed myself at a TV show and I have spoken for the first time about F.O.P in order to initiate a campaign for enlarging the allowance for disable people and to start a project for a “Breathing Center” in the region where I live in.
Everybody needs a break and during the years, because of the lack of the alternative services given by the government the parents had to stay 24h/24h with their disable kids, and they have to give up their own dreams, their own hopes just for taking care of us. This type of Center will give a temporary chance to the parents to try to enjoy life and do some things also for them, knowing that their kids are in good hands and authorized person will take care of their kids in the meantime.
Do you know that the allowance for a disable person in Romania is of 74,98 Euro, which I found it inhuman taking in consideration that with this amount of money they have to live( eat, buy medicine, and pay bills)
This disease had made me a prisoner of my own body, although I consider myself being a free spirit. I can’t sit on a chair, and to fit in the car my father is helping me. My biggest need is an adapted car for a disable person in order to gain some independence and to easy up my parents life not to force them to lift me up all the time. Things were never easy, are not and they will never be.
So…I fight to have a normal life, to be happy and to fill included into society.