Most people have never met a person with albinism. It’s fairly uncommon, only about one in every 17,000 people worldwide are born with albinism. So today I thought it would be good to write up a big informative post. We’re learning right along with you, so hopefully this post will help bring some awareness about our daughter’s condition and answer some questions.
Albinism is a genetic condition that can happen when both parents carry a recessive gene. People of every ethnicity have albinism. Most people with albinism have parent’s who don’t have it. And when our daughter grows up, her children will not have have it unless her and her husband both carry the gene (and then, it happens at random).
People with albinism have normal intelligence. Most people with albinism have white skin and hair, and light colored eyes- usually blue or violet (not red). Because of this lack of pigment a daily sunscreen routine is required to keep their skin safe.
Sensitive eyes is another symptom. Children will often wear sunglasses to protect their eyes, and adults often wear colored contacts because they offer more protection.
All people with albinism have some level of vision impairment that isn’t correctable with glasses. We won’t know the extent of Nova’s vision issues until she is home with us. A lot of people with albinism are legally blind. This kind of vision is sometimes called “functional vision”, where the person can see well enough to do normal daily routines, but they will need modifications in the classroom and throughout daily life.
In China (especially outside major cities) albinism is thought to be a curse or bad luck. Because of this fear children with albinism can often be mistreated or kept out of school, stunting the rest of their life. Because of this, we believe the US will be a better place for Nova to grow up. There are a lot of things we’re not proud of when it comes to being an American citizen, but our efforts to embrace and celebrate diversity are something we are extremely proud of.
If I get any more repeat questions I will come back here and add to this post. I don’t plan to talk about albinism all the time. Obviously we want our child to be proud of her albinism, it’s something that makes her unique. That said, it’s not what defines her.
As someone who has a lot of tattoos I’ve often been surprised/annoyed when random people come up to me in the grocery store and want to talk to me about them. And when I was younger I’d dye my hair pink or neon red- and eventually I’d dye it back mainly because I got sick of people talking to me about it, yelling out their cars at me in public (haha) and asking the same questions over and over. Some people love this kind of attention from strangers, but I never have.
So in this small way, I can relate to how our daughter may feel in the future. Sometimes you just want to blend in, and it can be frustrating to not have that option.
ETA: I am not equating having tattoos with having albinism. I was only trying to say that I know how it feels to be harassed in public- and it feels shitty. I am very aware that I have no idea how it feels to have albinism. As a first time mom I am sure I will make a lot of mistakes, but I hope you can see that I am starting from a place of love and that I want so much to be a great mom.
We’re first time parents, so I’m not going to pretend we know what we’re doing… we don’t. Still, I get teary every single time I think about all the memories we will make together. We’re going to travel together, sign up for dancing and piano and art and swimming… all the things. Our plan is to try everything, push every boundary and stay open to new things. We want to give Nova the fullest, most magical childhood. We want her to feel supported and cheered along, not sheltered.
For more information, NOAH is a helpful resource.
I’ll probably link back to this post from time to time in reference to questions.
ps. THANK YOU so much for the outpouring of love and support!!!