I’ve explained some of the eye conditions that can be involved in albinism here, but in this post I’d like to discuss photophobia in detail.
Photophobia is light sensitivity, and in albinism, it results from the lack of pigment in the eye. Pigment in the iris helps to filter out light and protect the eye from damaging UV rays, but people with albinism have much less pigment in that part of the eye than people without albinism.
Because albinism can vary so widely, the level of photophobia in each person also varies. Photophobia can lead to excess squinting, headaches, eye strain, and the impairment of visual acuity. Read on to learn what photophobia may look like in a child, some challenging situations for people with photophobia, and what you can do about it.
Recognizing Photophobia in Your Child
If you’re the parent, grandparent, or other family member of a child with albinism, this section is for you. Children can’t always speak up to tell us what they want, need, or feel, but we can learn to recognize the signs of photophobia in a child. Every behavior has a purpose, especially where children are concerned.
Closing the Eyes
This will be the first and most obvious sign that your child may be dealing with light sensitivity. The child may keep his or her eyes closed outdoors, indoors under bright lights, or in other situations that will be detailed later in this post. The eyelids are the body’s second protection from painful lights (after the color in the iris).
Squinting helps to block out most of the light while still allowing the child to see the world around him or her. Squinting is something we all do at times, but it can greatly limit the visual field. Many of use with albinism squint because of poor visual acuity, but keep track of the settings in which your child may be squinting more than normal.
Burrowing or Covering the Head
Burrowing or covering the head is a behavior that may be exhibited by younger children. They may not yet know how to verbalize their issue, but may be capable of covering their eyes, faces, or heads with a blanket, shirt, parent, or whatever is handy. It may be adorable behavior, but remember that every behavior a child does has a purpose.
Shielding the Eyes with a Hand or Other Object
I still do this today. Even with sunglasses on, the sun can still be intense enough to hinder my vision. This behavior may be one exhibited by older children who have probably seen someone else shield his or her eyes.
This is a behavior I often do outside, but there is a version of this that I do inside as well. I will often cover most of my eye with my hand leaving a peep hole to view a screen through. I do this most often with my phone if I’ve got a lot to read.
Challenging Situations for People with Photophobia
Most people typically think that a nice sunny day is a beautiful thing to enjoy, and I feel that way as well. But, sunny days also come with caution for those of us with photophobia. These days are the obvious setting our minds go to when discussing photophobia and light sensitivity, but I’m going to list some other seemingly harmless situations in which you should also be attentive to your eyes or the eyes or your child or family member.
Don’t forget to keep reading through to the end where I share some things you can do to help you or your family member with photophobia!
Sunny Beach, Out on the Water, and in the Snow
At first glance, lumping these settings together may not make sense, but stay with me for a minute. The one thing that each of these settings have in common is reflection; sunlight reflects off of sand, water, and snow in a very extreme way. That reflection essentially doubles the brightness of the sun.
Those of us with photophobia would typically be able to look down at the ground and follow the feet of someone in front of us, but this is not the case in any of these settings. If we look down, light is now reflecting directly up at us under our sunglasses or other sun protection.
This is also why sunscreen is so important to those with albinism in these situations even on top of sun protection, but that’s another topic.
Overcast days can be an issue because of glare. Though the sunlight is not coming down in beams, it still fully lights up the sky, and cloud cover on an overcast day can turn the sky into a giant light box. I would definitely describe the lighting on these days as less intense than that of a sunny day, but it can still impact vision.
Inside the Car
Vehicles are another seemingly harmless setting that can cause problems for people with photophobia. Cars and other vehicles are essentially a box of windows with a roof. If those windows lack tint, then a car can become a very bright place depending on the angle of the sun and the shape of the vehicle.
Big Beautiful Windows
I so appreciate a room full of beautiful natural light, even as a person with pretty severe photophobia, but I do take precautions that make that beautifully-lit room more comfortable for myself. Big windows are wonderful for photos and displaying decor and lighting a room, but they can be so intensely bright that the room becomes an extension of the world outside. This setting can cause a person with photophobia to struggle to see objects and details within that room including faces and colors.
Fluorescent lighting is everywhere these days: stores, offices, churches, schools, and more. They’re extremely bright and often overused. They’re often placed more densely than is necessary, so those of us with more sensitive eyes may struggle in settings that use them.
Because we tend to spend so much time in these settings (offices, schools, and markets), fluorescent lighting can lead to headaches and eye strain. Some of the worst offenders are those with fluorescent lights and light-colored flooring. The lighting reflects off the flooring making the room even brighter and harsher.
What Can You Do to Better Deal with Photophobia?
I know the above list makes it seem as though those of us with photophobia are doomed to live a life of pain, but all of these problematic settings have a solution that can make life much easier and less painful.
Use Sun/Light Protection
Sun and light protection can include quite a few tools. Sunglasses are one of the biggest tools in this category, and the varieties are numerous. I personally love and recommend prescription sunglasses for children and adults who wear a prescription regularly. Getting prescription sunglasses was expensive for me, but it truly improved my day to day functioning. Options in the sunglasses category include: clip-ons or magnetic clip-ons, wraparound glasses that fit over your regular prescription, transition lenses (which I have not tried out yet), tinted goggles, tinted contact lenses, and even these new transition-like contact lenses.
Other tools in this category include hats, visors and other clothing that can be worn on the head to block out sunlight. Also in this category are umbrellas, parasols, canopies, beach umbrellas, and other items.
Make Use of Low Vision Tools
Out in the sun, I find a white cane to be a huge help, because bright sunlight severely impairs my visual acuity and field. I don’t always use a white cane, because I did not grow up using it, but it is so necessary in these extra bright situations. It can be a challenge to use in some areas though, such as snow and sand. There are several specialized cane tips that solve this problem though. You can learn more about those here and purchase them here. See tips such as the Dakota Disk and the All-Terrain cane tip or Bundu Basher.
Adapt Technology to Your Needs
Today, technology is so much more adaptive than it was in the past. You can make that technology work for you.
Blue Light Filters
You can find blue light filters on any of the major platforms. On Windows and Android, it’s called Night Light. On Mac OS and iOS, it is called Night Shift. You can find it under display settings on each of these platforms.
You can also purchase blue light filtering glasses on Amazon and elsewhere if you do not rely on glasses normally.
High Contrast & Dark Themes
Technology also allows us to adjust our screen contrast, color filtering, and theme. Mac OS and Windows both have accessibility options labeled Accessibility Settings and Ease of Access respectively. Both platforms allow you to use text to speech in the form of VoiceOver on Mac OS and Narrator on WIndows. Both platforms also have options to invert colors, filter colors, and change to high contrast display modes. These platforms also feature Dark Themes that transform the display of various applications to white text on a black background. This feature is a huge game changer for me personally. Using this feature with incompatible apps can require additional setting changes per application or per web page.
Individual applications and web pages can also feature individual theme settings. Many Google applications (YouTube, Drive, Keep, Gmail, etc.) feature a Dark Theme toggle when accessing them through a browser or device. Here’s a list on which one’s have this feature and how to enable it on Android and iOS.
Android now natively features a Dark Theme. This feature on Samsung devices is labeled Night Theme. Apple features this setting under the name Dark Mode.
On Android, I use an app called Article Reader Offline that allows me to open articles in a simplified view in which i can change the background and text color.
In my computer browser, I’m using an extension called Dark Reader that changes anything with a light background to a black background with light text. It also has options for brightness and contrast as well as sepia and grayscale modes. This extension is available for Google Chrome, Firefox, Safari, and Edge.
My eyes are also sensitive during the night while I try to sleep. Small lights like those found on electronics to indicate power or those on keyboards, mice, monitors, and other accessories (excluding the red lights) can be distracting to me at night. A change in lighting such as a light coming on outside or down the hall can also wake me up.
To combat these light distractions, I use a sleep mask. I cannot use the cloth ones because they touch my eyelids or eyelashes and make me feel uncomfortable. So, I use a foam style that has a concave design and is shaped like a dome over my eyes. This shape and material allows the mask to stay raised and away from my eyelashes and eyelids. You can find the style I use here on Amazon.
Window Tint or Window Coverings
Window tint can help in vehicles, homes, and businesses. Businesses often have large windows tinted to block out sunlight that can fade or damage merchandise and to make shopping a more comfortable experience.
Vehicle tint for vehicles is fairly affordable, and I highly recommend it. Window tint is denoted by the percentage of light it allows through. Most cars come with tinted back windows at about 15% – 25%. At the very minimum, I recommend you get matching tint for your front two side windows.
Window shades can also be found for various sized vehicle windows. I’ve seen homemade shades as well for those with a tight budget.
If you’re a person with albinism who is able to drive, I recommend some light tint for your windshield as well. This is not legal everywhere, but you’ll have to check with your state’s department of motor vehicles (DMV). You can often work around these types of laws with a note from your doctor.
At home, you can go with different options based on your budget and your style. You can have your home windows tinted, purchase a variety of styles and sizes of blinds, and/or utilize curtains to help make your living spaces more comfortable for those with light sensitivity. I personally use blackout curtains in my room on occasion. I prefer wide blinds, but they can be pricey.
Request Reasonable Accommodations
This tip is so crucial! Know your rights where you live. In the USA, the Americans with Disabilities Act (ADA) provides stipulations that regulate what is required of public programs and businesses providing services and jobs for those with disabilities. The changes and modifications I’ve mentioned above are all reasonable and can be done affordably. It’s important to be reasonable with your accommodation requests as stipulated in the ADA.
Reasonable accommodations for photophobia can include the following:
- Window coverings
- Accessible computer hardware and software as required by a job or school
- Adjustment to lighting (removing excess fluorescent bulbs)
- Reasonable intermittent breaks to help with eye strain (resting your eyes more often should improve productivity despite the apparent contradiction)
In conclusion, I hope I have answered all or most of your questions about photophobia. If you feel that I have left out anything or you have any questions, please contact me via one of the methods on my About page.