Why yes, I am an albino.

In honor of "International Albinism Awareness Day"

This post will be a little bit about my experience as an albino and as the mother of toddler with albinism. But I also want to raise awareness about (and hopefully some funds for) the plight of people with albinism in Tanzania, because what they face is horrific.

Albinism is an autosomal recessive condition, if you remember the Medelian square stuff. One can carry the recessive gene and not have the condition. It's only when one inherits the recessive gene from both parents, that it manifests. So, my daughter with albinism received the recessive gene from me, but also from her dad, who does not have albinism. That's the basics. There are different types of albinism, but I'm speaking broadly about oculocutaneous albinism. Basically, the eyes, hair and skin are affected because of the lack of melanin (the stuff that makes you tan).



My experience with albinism
I and my two brothers have albinism. Neither of my parents do and there is no known history of it anywhere else in our family. I don't think I've ever met another albino in my life besides my brothers and now my daughter. It's pretty rare in North America: 1 in 18,000-20,000.

My parents didn't even know I was an albino until I couldn't see the chalkboard in first grade. I have 20/60 vision, not correctable with glasses. I struggled to read the board and overhead projectors all through school. (I went back to college in my mid-twenties when everything had shifted to PowerPoint and Whoa! Way easier to see.)  I can't pass the eye test at the DMV, but thankfully I have a driver's license, though I had to jump through a few extra hoops to get one.

Probably the most difficult part for me as an albino was growing up in the 1980's when being tan was like a fashion requirement. I hated not being able to tan. People made fun of me in 8th grade, but I'm pretty sure that happens to 99% of eighth graders.

Two years ago, I had my second child and her pediatrician suspected albinism when she was three months old. A pediatric ophthamologist more or less confirmed it. She wouldn't say outright (which was weird), but I'm quite certain that Maggie has albinism. I think she sees very similarly to me just from observing her (holding books close and not picking up far-away details).

You may have noticed that I use the terms "person with albinism" and "albino" pretty interchangeably. The word "albino" might be considered offensive to some people and I'd guess for a lot of people, that's because the word is sometimes used in a derogatory way or has a negative connotation because of the way albinos are portrayed in media. Albinos in movies are usually villains or red-eyed people in basements with magical powers. Growing up, when people called me an "albino," it was often done in a mean-spirited way. Personally, I've chosen to use the word to normalize/neutralize it for me and for Maggie. Others with albinism might feel differently.

That's me with two of my nieces. My two brothers have 4 children apiece, none of them albinos.

Albinos in Tanzania and other parts of southern Africa
The incidence of albinism in Tanzania and other parts of southern Africa is much higher than it is in North America, around 1 in 1500. And because of a pervasive cultural belief that people with albinism are ghosts and that their blood and limbs hold magical powers, they are hunted, sold, dismembered and murdered. They live in fear for their lives. Children with albinism often are not sent to school for fear of being kidnapped. Assailants break into homes at night and commit horrific atrocities against children and adults with albinism. Sometimes, it's even family members selling their albino relatives, or tipping off kidnappers.
This NY Times article from May of this year pretty much sums it up.

Here is the organization that is really doing something about it: Under the Same Sun (UTSS), started by Peter Ash of Vancouver B.C. It's hard to read about some of the truly horrible things that have happened to people with albinism, but it's worth perusing UTSS's website to read about their programs, which are really making a difference and bringing hope to many people with albinism there.

I have a personal fundraising page for UTSS, with a goal of raising $500 for them. You can check that out here.
My fundraising page

Thank you for your support! And feel free to share that page on your social media accounts.


National Organization for Albinism and Hypopigmentation (NOAH) is a great place to start if you want more information about albinism in general.

Also, please don't hesitate to contact me if you have specific questions about anything here.

Happy Albinism Awareness Day!