Good evening to everyone, I am new here, this is my first release and I would like to share with you how to live with a tumor from a personal perspective.
My name is Nikola I born in 1992 in Belgrade in Yugoslavia. Today Serbia.
In March 1994, as a baby, I hurt my hand during sleep and my parents take me to a hospital in a hospital where they found that my hand was partially broken.
For 7 months, they tried to fix the doctors because my arm did not cure when they were broken up in the hospital to get over it.Then, for the first time, I suspected that I was suffering from type 1 neurofibromatosis I inherited from my mother.
In December 1997, after the parents noticed that I started to see a weaker one, and after the examination of children's neurophthalmologists and MRI, the diagnosis was confirmed.
The review noted the existence of a benign tumor on the ocular nerve, on the optic hyasma.
After that, regular controls to date have been accompanied by the state of the tumor that is still there, as it is very risky to remove it ... Due to this problem, for the sake of luck, I have not lost sight, but my vision is significantly weakened. My diopter is -2 on both eyes.
Let's get back on our hands. In 2000, I was trying to extract my right forearm, which was slowly increasing due to NF1. It was done at the Institute for Orthopedics in Belgrade, the method of Ilizarov
Even this method did not give complete results and after 6 months the device had to be removed because the hand began to discard it.
My parents were then told that the doctors had tried everything they could and could not help me anymore and that the situation was being monitored. Today my hand is 15 cm from the left, I can use it at most 40% with orthopedic help and it looks like this.
I can not write with her, stop or even carry weight of 3 or 4 kg in it, I'm practically left-handed because of that.
And if my illness is not contagious and is not conveyed by touch, by grinding, looking or staying in the same room with me, the children have been avoiding me throughout my schooling. Symptoms of myself are not beautiful, but I'm not silly if I have them. Symptoms are manifest in appearance of changes in the skin in the form of a color of color of coffee and fibers of different sizes. I photographed them on my body.
Today, with my 25 years of experience, I try to lead as much as possible a normal life. I did not pass the driving test, I do not know how to ride a bike, roller skates, skate, I can not swim, but still I do not mind traveling when that heavy family financial permit allows me, I like to volunteer in sports, to meet new people I consider that even if I have reduced working abilities, I have the same rights.
I study at the Agricultural Faculty in Belgrade at the Department of Plant Protection.
My favorite sportsman is Novak Djokovic, whom I met last year.
Now I would ask all the people who can do it and want to vote for my post and donate to me as much as I can, because because of my hand I can not work, and my parents have been out of work for a long time without having to pay a rent in the student dormitory where I live.
I have not paid for two months and I'm afraid they will have to throw me out. It will mean that I will be prevented from completing the college end.
For all your questions I am at your disposal and I will be glad to answer you.
Finally, I would quote my doctors from my illness not to die but to die with it.