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Life experiences

Describe your experience in relation to albinism

My name is Laura, I am a 44-year-old albino oculocutaneous 1A (OCA1A), I suffer from nystagmus and strabism and now my eyesight is at one tenth with correction. Among other things, a year ago I suffered a detachment of the vitreous body, first in the right eye then in the left. Nevertheless I am very independent and I have found over the years how to adapt.
In 1963, when I was born, we had very little information related to albinism and from what my parents told me opinions were somewhat mixed with some horrible outcomes! In fact my mother was told that perhaps I would never be able to see.
Living in Rome, I had the chance of being followed and visited by big and famous names in ophthalmology at that time, and my parents, of course, never refused to pay for it.
I attended public schools and always enrolled in regular classes. Of course I had serious problems trying to read the blackboard, but with the right information given to my teachers from my parents we always found some way to work around it. One of them in elementary school moved my desk (classmate included) to the front of the class which worked a little bit, but honestly, I still couldn't see well.
I have always felt shame for my eye condition, especially as a child, and even if the teacher (the one I had in the last three years of primary school) and a few classmates were sweet and helpful, it was not enough to lower the stress I experienced or to lower my sense of inadequacy about being different that I lived with every day (also related to my appearance: I was the only albino in the entire institution).
Since kindergarten kids made fun of me because of the colour of my hair, because I wore glasses, and because of my crossed eyes.
It was painful and caused me to block memories about some things that happened.
Down the street, I was always pointed at and this was very upsetting both for my mother and my father. They always told me of my diversity and helped me to live with it and accept it, telling me that there is room for everyone in this world and that I certainly had limitations, but that I was like all the other children and that I could succeed iin anything I wanted.
I've always been an open and friendly, talkative and determined (a bit touchy though!), I did not like how some kids would blackmail me and I loved honesty.
I often felt weak and insecure, anxious and worried, but I forced myself to try not to show it, sometimes not even to my parents, I didn't want to cause them more grief.
Although I did not like studying (it was really hard for me), with the necessary precautions, I went to school without ever being voted down and I achieved personal success. It was not easy, but what drove me was the strong desire to become an autonomous person, able to support myself and do a job that I liked.
At the age of 24 I graduated in Psychology and then I trained as a psychotherapist. I took a lot of interesting and challenging courses, and I dedicated myself to various volunteer activities. In the last two years I have achieved two important projects: to participate as a reporter at a national conference of psychologists and psychiatrists and to write a book.
I am proud of myself, of what I have done and achieved, despite my limitations. Thanks to my iron will, my enthusiasm, my determination, the emotional support and confidence of my parents, friends and teachers I've come this far and I have learned and I am still learning, that the real limits are not just the visible ones, but also the mental and emotional ones, those that are born from fear.
A disability is a handicap only when you let it block you.
It can sometimes be more comfortable to put up a wall especially when it comes to intimate relationships with others and facing possible rejection, or when we do not want to risk a professional defeat. In these situations we can say that we have a limit that makes us different and that maybe we can not compete with others, etc. This is the real handicap!


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