Albinism

Hello! Long time no chat. I meant to post this little snip bit about my condition before June 13th, which was International Albinism Awareness Day, but I got caught up in preparation and travel for World Championships that I just couldn’t find the time, but here we are now! Back at it again.  

As many of you know, or if you don’t know, I was born with a condition called Albinism. I mentioned above that June 13th was international albinism awareness day which is a day meant for educating the public and recognizing people with albinism all over the world. I was very fortunate to be involved in a campaign about albinism that the United Nations put out. If you want to watch the video I did with them you can head over to any of their socials to watch J

I knew before I worked on the campaign that many people know of albinism, but not many people know what the condition is or how it effects daily life of each person who has it. Today’s post is all about that.

Albinism, in a broad and general term, is a condition in which the body cannot produce melanin. Melanin is what gives each person their pigment, so skin, hair, and eye color. The inability to produce melanin leaves the person with very pale skin, very light hair, and very light eyes. There are different types of albinism, but I have the most stereotypical type, oculocutaneous. This means that every part of my body is affected more severely and because of the type I have I look, like I said, like a stereotypical albino.

What I have found interesting is that most people don’t realize that melanin is involved in the development of your eyes. Melanin helps the formation of the optic nerves in your eyes, so people born with albinism typically have a visual impairment because the optic nerves tend to be underdeveloped due to the lack of melanin the body produces. Obviously, each person varies, but albinism affects everyone’s eyes to some degree.

I’ve been visually impaired since birth (you’re born with albinism; you cannot catch it). I got my very first pair of glasses when I was 3 months old, and they were bright orange. That color wouldn’t have been my first choice, but they helped reduce glare, so I’ll let it slide. I was also born cross-eyed, so when I was about 3 years old, I had eye surgery to loosen some of the muscles in my eyes so they wouldn’t naturally cross over. With the surgery and use of glasses though, I am still legally blind. Here’s a little breakdown of my vision and what I do to try and maximize it.

1.     My irises are translucent due to the lack of melanin. This means that my eyes have a hard time filtering light, so I am very light sensitive. Lighting plays a huge factor into my vision. Sunglasses are essential when I go outside so that way I can keep my eyes protected from the sunlight.

2.     One of the other conditions associated with albinism is called nystagmus. This means my eyes are constantly moving in little rapid movements from side to side, up and down, etc. In a general sense I can’t tell that my eyes are moving, but If I try and focus on something, like a light, it looks like the light is flickering back and forth.

3.     My eyes will sometimes look more red than other times and this is due to my irises. The red color is the blood vessels and my retina in the back of my eye. Pretty neat, huh?

4.     I only read with my right eye. For me, my left eye is weaker than my right, so it’s hard for my eyes to focus on one thing together. Since my right eye is a little better, I’ll close my left and just read with my right.

5.     I do have glasses! I wore glasses all throughout my childhood, however they don’t correct my vision much. I am still legally blind with them on, so I mainly use my glasses to read, travel through unfamiliar places, and do homework/other paperwork.

6.     Eyecare is essential! I was always so stubborn as a kid when it came to wearing sunglasses or my glasses. Now that I’m older I don’t go anywhere without either of them. It’s important for me to protect my eyes and keep them as healthy as I can, so wearing sunglasses when it’s bright and wearing my regular glasses when working so my eyes don’t get as fatigued is crucial to my own eye health.

7.     Adaptation has been a huge part of my independence. I was lucky enough to grow up with parents that didn’t treat me any differently than other kids, so from a young age I learned how to do different things in a way that worked for me, even if it was different than the “normal” way.

People often tell me that they’re sorry for me or that I’m an inspiration for dealing with what I have. Truthfully, I don’t consider myself anything other than a person who happens to have a visual impairment. I have been beyond blessed in my life and I wouldn’t change anything about the way I am. My visual impairment makes me stand out from the crowd, which I now accept as something positive rather than negative. I’ve learned to adapt and overcome obstacles in my way, and I know I won’t be slowing down anytime soon.