International Albinism Awareness Day
By: Arielle
Today is International Albinism Awareness Day (Fr: journée internationale de sensibilisation à l’albinisme). Most of you are aware that I have a condition called albinism (I am albino) which causes lack of pigmentation in my hair skin and eyes. It also causes poor vision. Albinism is rare and there are many myths and misconceptions about it. In some parts of the world, people with albinism are hunted for their body parts or die from skin cancer at a young age. In honor of International Albinism Awareness Day, feel free to ask me questions that you might have about albinism.
Hey Arielle!! What’s going on? I think it is SOO awesome you are bringing attention to albinism. I was wondering whether you have always had albinism or not? Were you born with it? Have you met other people with albinism in your school? It is so awesome you have such a sweet network of people to celebrate who you are! :D
Hi there. So to answer your questions… albinism is a genetic condition so I was born with it. Albinism never just appears randomly in life. It’s either you have it or you don’t. Albinism follows simple genetics meaning both of my parents were carriers who passed on the gene to me. Albinism is a life long condition and there is no cure. However that doesn’t really stop me or my other friends with albinism from doing what we want. I have met one other student with albinism in my school. This is very rare. Albinism is rare and it occurs 1 in 17,000 people world wide so we don’t run into each other often. I usuallt meet people through the National Organization for Albinism and Hypopigmentation (NOAH). Their website is albinism.org if you want to know more about the condition. Or you can reply below and I can answer more questions! ????
Hi Arielle, I enjoyed reading your posts and really admire your positive out look on life. I was even in a better mood after I was done reading your blog posts. I wanted to ask you, what is your favorite thing about attending NOAH’s Family Camp and what is a typical day at the camp look like?
Ya know. You have me a good idea. I will write a more detailed blog post about NOAH camp when I get back. What really impressed me about the camp was fact that the kids could just be themselves without worrying about albinism. They didn’t need to explain o anyone if they needed to apply sunscreen or wear hats and sunglasses. No one cared if they poked their faces into things.