Tell us what you understand about albinism and how it was explained to you.
I was the first one in our family to be born with albinism and no-one knew much about the condition. Now I have a younger brother of 11 with the same condition. My father’s best friend explained a little about albinism to me when I was young. He was the only person with any knowledge of the condition.
One day as I was walking to school, a person whose sister has albinism approached me and told me about the Albinism Society of South Africa (ASSA) and its support groups. I made contact with ASSA and this has really changed my life as now I know a whole group of people like me. We share information and life experiences and support each other. I now understand why certain people have this condition and that it is nothing to be ashamed of, no-one is to blame.
Tell us what it is like to live with albinism. What are the challenges?
Until a while back I had no confidence and did not like myself at all. I would hide between my friends wherever we went so that people would not see me. I hated being different.
My brother, however, says he loves his skin colour and has no problem with his condition. But where I have many friends and love socialising he never goes out and is only interested in his games and schoolwork.
What is the hardest?
The greatest challenge is that people have so little knowledge of albinism. Sometimes people call me names, and that hurts. Even my friends and teachers don’t understand all the time, such as when I struggle with my eyesight in class and can’t copy stuff from the blackboard.
What helps most?
I’ve come to realise that all people have challenges and that one has to learn to live with yours. The support group has changed my life. I now have much more self-confidence and have learnt to love myself exactly as I am. I think it helps that I am very outgoing, have lots of friends, and can express myself through singing and dancing.
I am grateful for all the information I receive from ASSA, such as caring for my skin so that I don’t get sunburnt. My family did not know about that. They also assist with eye tests and glasses for my brother and me.