“You know you need some better glasses.” “Honey, if you’d wear your glasses, you could see that.”
Why do strangers feel the need to share their personal opinions about my vision? Well, when you find an answer for that one, please feel free to share. These are just two of the comments I’ve gotten delivered in a condescending tone by complete strangers in public, and I’ve heard even worse from others with albinism.
Here, I break down the vision of people with albinism and describe the underlying issues as well as nystagmus, strabismus, and photophobia.
The Optic Nerve and Other Underlying Issues
Albinism affects the brain’s ability to conduct impulses from the retina through the optic nerve to the brain, and basically, information that is sent from the eyes to the brain is flawed. The number of nerve fibers that travel from each eye to each side of the brain is also affected. Albinism also leads to the underdevelopment of a part of the eye called the fovea, which is responsible for fine central vision. This means that true fine binocular vision is impossible for many with albinism. Glasses, contacts, and surgery cannot affect how the fovea or the optic nerve works, so these limitations are more permanent.
Myopia, Hyperopia, and Astigmatism
People with albinism can also have some of the same visual impairments that others deal with including myopia (nearsightedness), hyperopia (farsightedness), and astigmatism (a distortion of the lens). With nearsightedness, the eyes can perceive things that are closer but may struggle with farther objects. This is the case in my vision. For example, I can read my phone while holding it inches from my face, but I cannot see the facial features of a close friend from five feet away. With Farsightedness, the opposite is true; objects in the distance are clear, while reading glasses (glasses with magnification) need to be used for closer objects. Unlike the previously mentioned issues, these can be improved with LASIK surgery, glasses and contacts.
Nystagmus, Strabismus, and Photophobia
The final piece of our vision includes outside factors that vary for each person with albinism. These include nystagmus (an involuntary shaking of the eyes), strabismus (eyes that don’t move together), and photophobia (sensitivity to light).
Nystagmus, or shaking eyes, can diminish visual acuity in that the eyes have less time to focus on objects. For me, I do not feel my eyes physically shaking unless I make an effort to notice them, but because they are constantly moving, I struggle with reading in cars, reading text quickly (such as subtitles), or focusing on seeing several things at once. Nystagmus also causes eye fatigue to become a frequent issue. Also, the physical appearance of nystagmus can be unnerving to some, and some people with nystagmus have been accused of drug use due to this condition.
Strabismus can cause the eyes to look misaligned, and the eyes can angle in any direction. If severe cases of strabismus are not corrected with surgery in childhood, eye development can be affected. As a personal note, my eyes were badly crossed at birth, so I had three different surgeries along with vision therapy to correct this issue. This condition also contributes to my inability to visually focus on several things at one time.
Photophobia is the sensitivity to light, and photophobia occurs in people with albinism because our eyes lack pigment to some degree. Because the amount of pigment among people with albinism varies so greatly, the amount of photophobia also varies from person to person. Sure, photophobia causes issues on sunny days, at the beach, and in the snow, but other situations and settings are often overlooked.
Overcast Days: On these days the sky is a gigantic solid-colored light source. Imagine a giant light box for your normal eyes, and that is how an overcast day appears to some of those with albinism.
What can you do? Sunglasses and hats are some of the best options in this situation. Some also opt for transition lenses.
Fluorescent Lights: These lights are harsh on normal eyes, but they also act as a giant light source. In settings that use florescent lighting, these lights are very overused. Florescent lights are cool and harsh. Warmer-toned lights are gentler on people who suffer from photophobia.
What can you do? Getting a light tint on your regular glasses or wearing amber lenses can help with this problem. The amber color adds a warmth that filters out some of the harsh cooler-toned light. This works the same way as Night Shift, Night Light, and blue light filters function on your smartphone, tablet, and computer. Sunglasses in this shade also help to cut down on glare but do take some getting used to at first.
Cars Without Window Tint: Being in a car can be tough for those with photophobia, especially when the car has no window tint. Sitting inside a car is essentially like sitting in a glass box with a lid. Sun comes in from all sides at times, and this can be blinding and even painful for some. Another issue that can occur in a car without window tint is sunburn. A person with albinism can absolutely get sunburn while sitting inside a car, but that is for another post.
What can you do? I highly recommend getting all the windows in your car tinted if you can afford it. You can also get a light tint put on your windshield, but some areas do have rules about this. It makes a shocking difference. A cheaper alternative is a sunshade for your child’s window or the passenger window where you sit normally, but this option can impair the view of the driver so use this option with caution. Solving this issue is more of a challenge for those who don’t ride in the same car or cars again and again. For that group, sunglasses are a must, and I would also recommend sitting in the center of a back seat if the sun is particularly harsh.
Seating That Faces a Window: Restaurants, homes, coffee shops, stores, and any setting with lots of sunlight can be a challenge. Again, this brightly lit window becomes a giant light box and makes it much harder for a person with photophobia to see anything, such as the face of a friend, a menu, their phone, etc.
What can you do? If you have friends with photophobia, let them have that seat with their back to the window. If you have albinism and/or photophobia, explain this issue to your friends and family and ask for your seat preference. They’ll most likely understand. I feel so rude when I wear sunglasses indoors, so I always opt for the seat with my back to any windows. I still struggle to read menus in challenging lighting situations, so going over what’s on the menu with a friend can help along with taking pictures of the menu with a smartphone.
If you have more questions about these topics, you can contact me here, or check out our resources and references here.
Stay curious.
Danielle Moulds
Albinism Up Close 