WHAT IS ALBINISM?
Many people think they don't know what albinism is because it's usually referred to as "being albino". I however, feel that albinism is a condition, not an identity. As much as I love blonde jokes, having blonde hair is a characteristic, not a defining attribute. Same with many other characteristics or attributes or conditions we may have.
Albinism is a recessive genetic condition that affects vision and often gives the person little or no pigment in their eyes, skin and hair. Some people with albinism, however, have very normal pigmentation for their ethnicity.
Xue appears to have oculocutaneous albinism, which is the more common type. (The other is ocular, and affects almost exclusively males, and primarily impacts vision and eye pigmentation, not skin and hair pigmentation.) Within oculocutaneous albinism (or OCA), there are several subtypes, which are linked to which gene and melanin-related enzyme is affected. The stereotypical "albino" look, with completely white hair, pink-white skin, and depigmented eyes is usually indicative of OCA1A or "complete" albinism. This is what Xue appears to have. (In short, she will make her Viking siblings look downright swarthy.)
WILL SHE HAVE PINK EYES?
Nope! Surprised? Yeah, I thought that too. I thought white skin and pink eyes were the definition of albinism! Turns out no one has pink eyes. People with albinism have blue, gray or violet-looking eyes, or if they have more pigment, they may have hazel or even brown! "Depigmented irises" are actually blue! Beautiful, gorgeous, crystal blue in fact. :) That's what my baby has.
So why does everyone say that people with albinism have pink (or red) eyes?
Have you ever had "red eye" in photos? That is caused by the light (usually from the flash) reflecting off of the blood in the choroid behind your retina. Something similar happens in people with albinism. The sclera ("whites") of the eyes have no pigment, nor does their iris, and when light hits their eyes at certain angles, a similar pink or red-effect occurs. In normal light, you get to enjoy their beautiful baby blues (or whatever they are).
WILL SHE EVER BE ABLE TO GO OUTSIDE?
Absolutely. Because of the lack of pigment in her skin, she is unable to tan and will burn quite easily and be at higher risk for skin cancer. The solution? Long clothing, hats, and LOTS of sunblock. I think I'm going to have to find a brand of sunblock that we like and buy it by the gallon.
Also, because her irises and sclera have no pigment, they let a LOT more light in than your eyes or mine do. The result is that feeling you get when you turn the bathroom light on first thing in the morning. TOO MUCH LIGHT! In a great primer book on albinism put out by NOAH (more on NOAH later) called "Raising a Child With Albinism", they describe it this way:
In closing, the best resource I have found for information about albinism is the NOAH website. (National Organization for Albinism and Hypopigmentation). They have forums, resource lists, and pages for people with albinism and people who just need to write a paper about albinism. I found that amusing and helpful.