Elizabeth Has Albinism
Fewer than 5 out of every 100,000 people in the U.S. are born with this rare genetic disorder. Elizabeth, 16, is one of them.
By Elizabeth Armstrong, as told to Jane Bianchi
Casper. Snow White. Paper. Freak. These are some of the not-so-nice names that I was called in sixth and seventh grade. One girl would often get my whole class to tease me, and nobody would sit with me in the cafeteria.
That’s because I was born with a medical condition called albinism, which I’ll have for the rest of my life. It means that I have no pigment in my skin or hair due to a flaw in my genes.
I used to get made fun of a lot at school. This one time, a mean girl came up to me and asked, “Are you mentally unstable? Can you do witchcraft and magic?”
Sometimes people think the stupidest things just because you don’t look like they do. I said no to both questions, of course. She replied, “That’s not what one of my uncles said.” I got so angry that I threatened to hurt her if she wouldn’t be quiet.
We both ended up getting in trouble. She had to write a report about how albinos aren’t witches, and I had to go to in-school suspension for three days. I feel bad that I stooped to her level, but she made me so mad!
It’s not just school that can be difficult, though. When I’m walking down the street or at the mall, strangers stare. People come up and pet my hair, like I’m some sort of puppy. Other times they talk to me like I’m 5 years old. My brain works just fine, thank you very much!
I remember the first time that I realized I was different. I was 5 and was playing with my cousin. He grabbed my arm, held it next to his, and said, “Whoa! You’re so pale!” At the time, I had no idea why. Eventually, I learned that I had albinism.
Living with the condition has its challenges. My skin burns really easily, so I have to wear sunscreen every day (and there’s a lot of sunshine where I live in Tyler, Texas!). And if I ever tried to dye my hair, the chemicals would burn my scalp.
I’m also legally blind. I have trouble seeing super-small things and super-faraway things. Reading a menu or the chalkboard at school is hard, so I use a cool handheld telescope that works as a magnifier. I also have an eye condition called nystagmus, which makes it hard for me to focus.
I use a cane whenever I’m walking in an unfamiliar area to detect any curbs or curves. Driving, if I attempt it someday, will also be tough. I’d have to use a special telescope that attaches to glasses, and I wouldn’t be able to drive faster than 45 miles per hour, at night, or on highways. I’m not ready to try it yet. I’m too afraid of hurting myself or others.
Finding a BFF
In eighth grade, things started to change for the better because I met a girl named Rachel, who is now my best friend. She doesn’t judge me. We both listen to screamo music—it’s the best—and I love that she doesn’t care what anyone else thinks of her. It has helped me realize that I don’t need to care what anyone thinks of me, either.
Every day at school, I brace myself, because once in a while a classmate will still call me a name. But I’ve learned to shrug it off. Instead of getting mad, like I used to, now I just ignore it. Plus Rachel stands up to those kids and says stuff like, “Leave her alone. You’re not perfect.” It’s awesome that she has my back like that. I feel less alone.
Looking on the Bright Side
There are actually benefits to my condition. For one, I might qualify for a scholarship for full college tuition. And I got a free iPad, because it helps enlarge some of the text I need to read at school. I also go to summer camp with other teens who have visual impairments, where I get to go rock climbing, boating, and more. And check out my eyes! I have a special eye color because I’m albino—it’s a purple-blue color. I love that I look unique.
When I first tell people what albinism is, they feel sorry for me. But everyone has something that they struggle with. I know that I will always have to deal with being bullied and having visual impairment, but when you go through stuff that’s hard, it gives you a thicker skin and makes you a stronger person.
I’ve accepted the fact that I have albinism, and no matter what people say, I know that I’m doing just fine—and that’s all that matters.