Albinism: What is it & What do I See?

International Albinism Awareness Day is June 13.

I find it a bit ironic that it is right in the midst of the summer heat for half the world. That irony is based on a bit of a stereotype. Many of those with albinism do enjoy sun and summer, though I personally hate the heat. We certainly have to be more cautious in the sun. More on that later.

Albinism is a genetic condition that can be broken down into two major types: Oculocutaneous Albinism (OCA) and Ocular Albinism (OA). Both are recessive genetic conditions meaning that both parents must carry the gene or genes for OCA and/or OA for a child to be born with the condition. If both parents carry the gene, each child they have will have a one in four chance of being born with the condition. Both OCA and OA have multiple genetic variants and can result in differing symptoms.

If you’d like to experience some of this information in audio/video form, check out my related video.

Oculocutaneous Albinism (OCA)

Oculocutaneous Albinism (OCA) is more prevalent than OA with it occuring in one in 20,000 people based on numbers from the National Institute of Health.

So, let’s start with the obvious symptoms. OCA affects the amount of pigment in a person’s skin, hair, and eyes.

Albinism is a huge spectrum. People with albinism come in all shades, races, and ethnicities. Yes, African American and Latinx people can also have albinism. Albinism is represented by people like me who have very little to no pigment in my skin, hair, and eyes, people with a level of pigment similar to their biological family members, and people who fall between those two points in varying levels.

You can find examples here on the Positive Exposure gallery for albinism. Click on the link labeled “Albinism: (albinism.org).” I know. Some of you need photos. I get it.

Skin

People with OCA have less pigment in their skin than their biological family members. As I mentioned above, the amount varies by person and as a result of the genetic variant each person has.

Pigment protects the skin from UVA/UVB rays to some extent, and because those of us with albinism have little to no pigment, we can burn very quickly in the sun. I was absolutely slathered in sunscreen as a child, and I still use it quite liberally today as an adult.

Do I recommend a specific sunscreen? I get this question a lot. No, I do not recommend a specific brand or style. I recommend you use whatever sunscreen you prefer. I do recommend 50 spf, but anything above that is going to cost you unnecessarily for very little benefit.

Below are my tips for sunscreen application:

• Apply before you get in the sun (I apply in the parking lot before the beach or pool)
• Reapply every hour you spend in the sun (direct or indirect)
• Let the sunscreen dry before jumping into the water
• Spray under the edges of clothing because clothing shifts
• Don’t forget to cover your scalp with clothing or sunscreen
• Do NOT forget to coat your ears (this one is important)
• Cover areas you believe are shaded by clothing, because sun can reflect off water and sand back into your face or other areas of skin

My current favorite sunscreens this year are these two pictured below. I love a spray-on sunscreen for its ease of application, but I prefer a cream for my face.

For spray, I usually go with a Neutrogena because I don’t mind the texture, and I’ve had consistent results with that brand. I just recently tried Blue Lizard, and I’ll warn you that it is quite expensive. It does work, but so do many other cream sunscreens. If you spend tons of time in the sun, it might be a challenge to justify the cost of Blue Lizard. It would be for me anyway.

If you find yourself with a sunburn, I’m so sorry.

I recommend aloe vera gel with lidocaine like this one, but you can find it in nearly every supermarket and pharmacy. Put it in the fridge. The aloe will cool the burn and moisturize the skin, and the lidocaine will relieve some of the pain. I also recommend an anti-inflammatory medicine like ibuprofen, because sunburn is inflammation.

For more on sunscreen and what makeup I used, check out these articles:

• Sunscreen: How to Choose the Right Sunscreen and Apply it Properly
• Surviving the Beach with Albinism
• Numerous Sunscreens Found to Contain the Carcinogen Benzene
• Albinism & Makeup: The Challenges of Choosing a Foundation

Hair

OCA affects the amount of pigment in the hair as well. Again, I’m on the pale end of that spectrum with white or platinum blonde hair. You can find people with albinism with varying shades of hair including white, blonde, dirty blonde, and some light brown shades. Many of us also have a lot of fun dying our hair. See my post on my hair dye experiences for examples.

To learn more about the hair of people with albinism, check out these articles:

• Albinism & Platinum Hair: Keeping White Hair White
• Albinism, Platinum Hair, & Dye, Part One: My Journey
• Albinism, Platinum Hair, & Dye, Part Two: What You Can Learn from My Trial and Error

Eye Conditions of OCA

Albinism also affects the amount of pigment in the eye. This often means we have light-colored eyes, soft blues, greys, purples, etc. It also causes light sensitivity and contributes to some of the other related eye conditions in albinism.

I have written about the eye conditions of albinism more than once. This post about Why Glasses Can’t Fix My Vision is full of information about all the specific conditions resulting from albinism. I’ll list them briefly below and describe how I see.

• Underdevelopment of the optic nerve, which impairs binocular vision and depth perception
• Underdevelopment of the fovea, which is responsible for fine, central vision
• Nystagmus or an involuntary movement of the eye
• Strabismus or a misalignment of the eyes
• Amblyopia or lazy eye
• Photophobia or light sensitivity
• Nearsightedness, farsightedness, & astigmatism

For more information on these topics, check out articles that dive a little deeper:

• Nystagmus Explained: How It Affects the Vision of Those with Albinism
• Photophobia: Recognizing It, Challenging Situations, & What You Can Do About It
• Why Can’t Glasses Fix My Vision: The Albinism Perspective

What Do I See?

So, what do I see? This is another question I get a lot.

My visual acuity is very poor at around 20/700 without my glasses. Indoors and in good lighting conditions, that corrects to around 20/400, but my severe photophobia impacts my acuity and visual field quite a lot.

My vision is not blurry. Let me repeat that again. My vision is not blurry. Not in the typical sense in which someone with a slight vision impairment has blurry vision without his or her glasses.

The collection of eye conditions mentioned above combine to leave me with vision I would describe as follows:

Imagine you and I are sitting in a stadium with thousands of other sighted people. You and the other sighted individuals have binoculars and can make out the details of the environment such as the jersey numbers of the players, the ball, the players hair color, the label on the drink in front of you, and so much more. I sit beside you without binoculars. I can see that there is a game going on, and I can see the drink in front of me, but I cannot make out all those details I mentioned. My underdeveloped optic nerve prevents my two eyes from working together, which means I do not have traditional binocular vision, and I have little to no depth perception.

Another great example is that my vision lacks detail like a low resolution photo in a printed newspaper. I could see a man in the photo with a logo on his shirt, but I couldn’t make out the details of that logo.

Volumes could be written on the things I can and can’t see and my coping mechanisms that make it appear as though I see much more than I do. I’ve had a lifetime with my eyes to develop various skills that allow me to experience the world around me in a meaningful way.

This video is all about how I sometimes pretend I can see more than I actually see. Check it out if you’d like to learn even more.

• Video: Sometimes, I Pretend I Can See

Ocular Albinism (OA)

Ocular Albinism (OA) is x-linked meaning that males have a higher chance of getting the disorder. The National Institute of Health states that approximately one in 60,000 people with only one X chromosome will have the disorder and that the disorder is much less common in females.

Ocular Albinism features the same eye conditions as OCA listed above, but people with OA generally have normally pigmented skin and hair. The lack of pigment found in the eyes of those with OCA is also present in OA. Some also present with hair and skin that is slightly lighter than their family members, but this is uncommon.

I also covered this topic in a separate article:

• Ocular Albinism: X-Linked & What That Means

Hermansky-Pudlak Syndrome (HPS)

Hermansky-Pudlak Syndrome (HPS) is extremely rare occurring in one in 500,000 to 1,000,000 individuals based on information from the National institute of Health. HPS has oculocutaneous albinism as one of its symptoms. Other symptoms can include a platelet disorder, cystic fibrosis, immunodeficiency, and intestinal issues.

HPS also has several variations and as a result, various levels of severity.

Conclusion

In conclusion, Albinism is a disorder full of people who fall along a huge spectrum of symptoms, visual acuity, and appearances. We all have varying challenges, strengths, and talents as well. Take some time to explore my site for additional information and resources. You can find more helpful links on my resources page.

Stay curious.