I will never forget the words the doctor spoke while I was in labor and delivery with my daughter, before I’d even seen her myself: “She has tons of hair, and it’s so blonde!”
After her first bath, it was discovered that her blonde hair was actually white. Not platinum or towhead, but white. Soon after this revelation, a pediatrician came to visit and asked: “Have you ever heard of albinism?” I had not. Our daughter was 24 hours old. I had so many questions about albinism myself, and we quickly took to the internet for answers.
Albinism, which my child lives with, is a genetic condition that is defined by a lack of melanin pigment in the hair, eyes, and retina. There are multiple types of albinism, and our daughter M has oculocutaneous albinism type 1A (OCA1A), meaning that she produces no pigment.
When M was a baby, we got so many comments on her fair skin and white hair. So much so that I often didn’t feel comfortable taking her into public alone. I slowly developed a thicker skin and learned how to answer questions while not feeding into every curiosity. As I mentioned in my most recent post, we get a lot of questions about M’s appearance, most frequently when we’re out in public by people who mean no harm but have awful timing.
Here are the most frequently asked questions about albinism we get as parents, answered.
How common is albinism?
In the United States, one in 20,000 people has a form of albinism. One in 40,000 has OCA1A like M.
Isn’t that the same thing as being albino?
Within the albinism community, some people prefer the term albino while others use person-first language. As parents, and not people with albinism ourselves, my husband and I have made the choice to use person-first language until our daughter is old enough to decide for herself how she would like to identify.
Did you know your daughter would be born with albinism?
OCA1 is an inherited genetic condition, in which both parents must be carriers for a child to be symptomatic. Neither myself nor my husband have ever heard of someone in our families having albinism before our daughter. In fact, most people who inherit albinism are born to parents with typical pigmentation.
Will your other children have it?
One of the most common questions about albinism we get is about whether or not future children will inherit albinism. Each pregnancy in which both parents are carriers has a 1 in 4 chance of a child have the condition and a 2 in 4 chance that the child will also be a carrier. I am currently pregnant and we have no idea if this baby will have albinism or not. There are tests we could have done to find out, but they’re all invasive and we will be happy with the outcome no matter what.
Of course! Due to the lack of pigment, people with albinism are at greater risk for burns and skin cancer. Because of this, we take great care with sun protection. M wears sunscreen (even on cloudy days), sunhats, and UV protective clothing.
Does albinism make you sick?
Nope! While some forms of albinism are associated with long-term bowel, lung, or bleeding diseases, the majority of them do not.
All forms of albinism are associated with some degree of low vision, which varies from person to person. When M was born, we were told her final acuity would be in the range of 20/40 to 20/400. People’s vision continues to develop into adolescence, so while her current estimated acuity is 20/200, it’s impossible to predict where M will wind up within that spectrum.
Specific things affecting the vision of people with albinism include nystagmus (causing involuntary eye movements), strabismus (crossing or “lazy eye”), photophobia (light sensitivity which means she has an awesome collection of sunglasses), lack of pigment in the retina, and the potential for the optic nerve to be formed differently. Our daughter is challenged the most by distance vision and depth perception, but you’d never know it watching her fearlessly navigate a new space.
Can’t she get surgery or glasses?
People with albinism can also have typical visual needs, such as astigmatism, which glasses can correct. However, the majority of visual issues that affect people with albinism cannot be corrected with glasses or surgery.
Why aren’t her eyes red?
My usual response is, “Well, she’s not a rabbit!” Truthfully, sometimes people with albinism’s eyes can appear red or violet. This is because the lack of pigment produced effects the retina and iris, which makes light reflect inside the eye and appear red, much like red-eye in a photograph.
Will her hair get darker?
Her hair will always be white, assuming we do our parent duties and wash it regularly. You might be as shocked as I was to learn that toddlers are messy creatures and their hair gets gross. A hot tip: dish soap takes spaghetti sauce or blue paint out of white hair beautifully. Not that I’d know from experience or anything.
The “Game of Thrones” one:
This is my personal least-favorite question and I get it a lot. Nope, she’s not a Targaryen. I don’t even really know what that means because I have never seen Game of Thrones.
Do you have a plan for each year of school and having a new teacher?
Some parents of children with albinism create packets and informational flyers for other parents. When children get older, I have also heard of parents co-presenting with their children on albinism to the class. Every time M gets a new teacher or member of her early intervention team we get a lot of questions about albinism, and we give them what I call “the spiel,” or Albinism 101. Right now, what that largely entails is general information about what albinism is, and how to meet M’s specific learning, visual, and sun protection needs. NOAH – The National Organization on Albinism and Hypopigmentation – has some wonderful and free resources you can give out to teachers, family members, and more.
Do you talk to her about albinism and is she aware that she doesn’t look like her friends?
We don’t actively make it a point to talk to our daughter about albinism or her low vision at this point, but freely talk about it when it comes up. It’s definitely not a secret and M is so little that we focus on modeling how to answer a stranger’s questions when approached. She also receives early intervention services, so her disability is talked about regularly at those appointments.
We also make a point to have books, toys, and pictures around that have people that look like her so she knows that while she may look different than the people in her immediate circle, she’s not the only kiddo out there with beautiful white hair and fair skin.
How is she treated by her peers?
Again, our daughter is so little that her peers, thankfully, don’t treat her differently. Adults are actually harder to manage. Well-meaning parents will often make a big deal out of her low vision or differences to their children before interacting with M, when we would prefer to just let the kids be kids.
What are some of the craziest things you’ve been asked or told about your daughter’s albinism?
This list is long. The truth is while we don’t mind fielding questions about albinism or talking about the condition some things can feel intrusive or even rude. Fairly often we will get told she, “Doesn’t look albino.” I am not even sure what people mean by that one. People with albinism are still people, just as varied in appearance as everyone else. The varying types of albinism come with varying levels of pigment.
We also used to get “I’m sorry” comments related to albinism or her other disabilities I haven’t mentioned. I tell people to not be sorry, we sure aren’t. We have a bright, beautiful, and wildly intelligent little girl who is an absolute delight.