By definition, albinism is a lack of pigmentation is the hair, skin, and eyes.

As simple as that may sound, there is so much more to it than that. If you’re up for it, I would like to break it down a little and add some personal opinions.

Let’s start with the simple stuff . . .

Hair. Albinism results in blonde, and even platinum, hair color. Basically, it’s pretty awesome. I get so many compliments on it! But, to keep it real, it’s also the reason a lot of people stare. Double edged sword, I suppose.

Skin. People with albinism are very pale because of the lack of melanin (what makes your skin the color it is). Because of this, people with albinism cannot tan and burn very easily. On a positive note, being biologically forced to take a more active role in sun protection should lead to pretty fantastic skin as we age!

Eyes. Alright, this is where things get interesting. It’s also the category that makes albinism a little complicated… and I’d venture to say that, besides the genetic component itself, it is the most misunderstood thing about the condition.

Short version:

• People with albinism have a visual impairment to some degree, but it varies from person to person.
• We also have an involuntary eye movement (twitch, if you will) called nystagmus. Again, it affects each person differently.
• Additionally, there is a range of eye color from person to person. More on that later…

Still curious?

Long version:

• Cause – During development, a few parts of the eye rely of melanin (pigment) to develop properly. With little pigment (or not much pigment at all), these parts are unable to do so, resulting in a visual impairment. This is also why our vision isn’t solely correctible by surgery – you can’t fix what isn’t there.
• Visual acuity – Some impairments are less severe, some can be greatly helped with glasses, some cannot be helped with glasses, some are considered “legally blind”, and some are near blind. “Legally blind” is a term assigned to people with a visual acuity of 20/200 or worse. In a nutshell, the term indicates that whether you are completely blind or “legally” so, you qualify for the same services and opportunities. Personally, I fall just short of legally blind status – 20/180 maybe? However, throughout the majority of my school years, my vision hovered at or a little worse than 20/200.
• Nystagmus – No, our vision is not shaky. It also is not blurry. However, it can lend itself to difficulty focusing, and thus, eye fatigue. There is a surgery that tightens the muscle and can be beneficial for some individuals. I have never had the surgery, but know several people who have. My nystagmus has never bothered me enough to undergo the procedure, but others have been happy wit their results. (It’s also not a one-time deal – the muscle loosens over time. At that point, it is a personal decision as to whether or not to have another surgery.)
• Eye color – Some people have blue eyes, some green, some hazel, and some brown. Like everything else, this is a case-by-case quality.
  • I’m not going to lie, I LOVE my eye color! Most of the time they look like a shade of purple. Depending on the light, sometimes they look more blue, grey, or pink. This is because my actual iris is a very light blue. When light is present, and since my iris is so light, the red blood vessels in my eye peek through. Blue + red = purple! Pretty cool, right?!
  • This also explains the “red eye” stereotype. People with albinism do NOT have red eyes. They can just appear that way because of a light iris combined with blood vessels and a light source.

Sorry to dump all of that info on you. It’s not that complicated until you get into all of the fancy medical mumbo jumbo. Please feel free to ask me any questions you may have! Education is key and I’m an open book!