Leann Gibson was born and raised in the small community of Wainwright, Alberta, Canada. Leann and her husband Steve are professional chefs who “fell in love over a buffet line,” as they like to say. Steve also serves in the Canadian military; thus, says Leann, “Moving is a way of life, so our home is truly where the heart is.”
Leann’s vision loss journey began in June 2012, when she awoke one morning with a sense that something was “not right” and had seemingly changed overnight. Coincidentally, she was working in an optometrist’s office as an optometric assistant at the time. At work later that morning, Leann was overwhelmed by a cascade of visual changes, including cloudy fragments circulating in her visual field, an extreme sensitivity to light, and an inability to distinguish faces.
After many consultations with ophthalmologists and neuro-ophthalmologists throughout Canada and the United States, Leann was finally diagnosed with autoimmune retinopathy in February 2014.
Autoimmune retinopathy is a rare eye disorder in which auto-antibodies damage the retina, causing progressive vision loss. An auto-antibody is a type of protein produced by the immune system that is directed against one or more of an individual’s own proteins. It is thought that in autoimmune retinopathies, the auto-antibodies attack proteins of the retina, causing retinal deterioration and disease.
Visual symptoms associated with autoimmune retinopathy include decreased central and/or peripheral vision; night blindness; poor color vision; extreme sensitivity to light; and photopsias, which are shimmering or flashing lights. You can read more about Leann’s long and circuitous path to diagnosis at As I was Sleeping on the VisionAware website.
Maureen Duffy: Hello Leann. Thank you very much for agreeing to share your story with our readers. As you know so well, it’s one thing to read a description of autoimmune retinopathy, and quite another to actually live with these symptoms, especially extreme light sensitivity. Can you describe to our readers what it’s like?
Leann Gibson: The best comparison I can think of would be looking through the static on a television screen. The movement is constant and ever-changing, and my field of vision is encased in strobe-like flashes of light. How well I see very much depends upon how much light is present. Inside my house (which I have fashioned into a “cave”), my symptoms are more subdued. Stepping outside, the world becomes an intense flashing white landscape that is void of color and detail.
MD: It’s likely that many VisionAware readers have light sensitivity as well. Can you tell us some techniques and adaptations you’ve devised to cope with sunlight and glare? And as a Canadian who lives in “snow country,” it must also be difficult to cope with reflected light and glare from snow and ice.
LG: One thing for sure is that you cannot escape light, so my most helpful aids are my prescription tinted sunglasses. It would be impossible for me to function without them. The tint of the lenses allows the world to once again have some definition and color – and even the flashing light is muted.
Working as an optometric assistant, I was able to gain first-hand experience with all of the different lens tints that are available. Each color option has varying attributes for a range of lighting conditions. These include contrast, color balance, and the percentage of light that is transmitted through the lens.
The most valuable piece of advice I can give is to find an eye doctor’s office (either an ophthalmologist or an optometrist) or a local blindness or low vision agency that has these options and see what works best for you. Don’t forget to ask to try them outside in natural light, because you want to be able to evaluate them in real-life conditions.
For me, I find that a gray tint works best for sunny days when glare is at its most intense, versus a brown tint I use on cloudy days because it heightens contrast and helps me see better. Another benefit of the brown tint is how well it works in brightly-lighted stores. Brown helps to diminish glare and isn’t so dark that it compromises the visual acuity I have left.
When I am venturing out on my own, I make sure always to wear a hat with a deep wide brim and carry a small umbrella. Shielding the light from above – whether it is from the sky or inside a store – makes a huge difference for me.
My most recent discovery has been the use of “fitover” sunglasses. My sensitivity to light has increased during the past few months, so even my prescription sunglasses are no longer dark enough. These sunlenses are meant to “fit over” regular glasses, but I figured I would try them over my sunglasses instead. What a difference they made!
By “doubling up” on the tint, I found the necessary relief to continue life outside my home. They come in a variety of colors and styles, and after testing out a few, I found that gray lenses work best for me. I am always on the hunt for “fitovers” and discovered that I can purchase them from almost any retailer that sells sunglasses.
MD: What strategies and techniques have you learned to use for indoor lighting?
LG: It has been a balancing act: learning how to block the natural light coming in the windows and figuring out which lighting fixtures and bulbs work best. I choose fixtures with cream-colored shades that provide a softer light concentration and I use soft white low-wattage bulbs.
In the kitchen and bathroom, I use a 60-watt (or equivalent) frosted spotlight bulb because it shines the light downward without being too harsh. I struggle with having either too much light or not enough light, so I’ve purchased smaller lamps that I have spread around the house to help even out the dark and light areas. On the flip side, I have night blindness, so for my safety I use nightlights in outlets and keep a flashlight handy.
As far as blocking out my windows, I really like room-darkening blinds and drapes. There are so many size options that I have been able to use them all over the house. For the windows in my front doors, I applied a stick-on window tint that lets in some light but is easier on the eyes.
MD: Have you worked with low vision specialists, orientation and mobility specialists, and vision rehabilitation therapists during the past several years as your vision loss progressed? If so, what did each profession bring to the learning process for you?
LG: I had a low vision assessment and a consult with a mobility instructor at CNIB a few months back. The low vision specialist went over all the tools that could assist me with daily life. It really helped me realize that I could make some tasks easier with the right magnifier, for example.
However, the one that “blew my hair back,” so to speak, was a monocular telescope. This device enabled me to see clearly in the distance for the first time in years! I hope to buy one soon.
My time with the mobility instructor was spent outside, testing the monocular and trying different sunlens tints. She gave me some instruction regarding sidewalks and things to pay attention to, such as where the grass ends, because this means a curb is probably coming. This may seem obvious, but when you have a hard time distinguishing the curb, this knowledge can do wonders for your confidence – not to mention your safety.
Afterward, I had an undeniable boost of positive emotion and I didn’t feel as alone as I did before. I understood that there were many individuals thriving with vision loss, and if I tried hard enough, I could be one too!
MD: Can you tell us what techniques and strategies you’ve learned to use for safe outdoor travel? Do you use a cane or a guide dog?
LG: When I plan to go somewhere on my own, I prepare a backpack with a few essentials. It is important to cover all my bases so I feel confident that I can handle whatever comes my way. I always pack extra sunglasses, a wide-brimmed hat, a folding umbrella, my cell phone, identification, and extra cash.
Leann’s travel essentials: a folding umbrella, wide-brimmed hat,
an assortment of extra sunglasses, and a cell phone
One of the biggest lessons I have learned as a visually impaired person is to slow down. So I keep to the inside of sidewalks, away from traffic, and I pay attention to how other people move. For example, I can tell that a significant step-down is ahead or which door to go into if I walk slowly and pay attention. If I come to a busy uncontrolled intersection, I will simply walk down to one that is less busy so that I feel comfortable crossing.
With my photosensitivity, one of the most difficult challenges I face is how long it takes for my eyes to adapt to different light sources and lighting levels, such as going from outside to inside or vice versa. With my photopsia, or flashing light, this symptom goes into overdrive and envelops my entire visual field. As it thunders away, I am held frozen in my tracks.
This poses a significant safety issue, so when I come out of a store, for example, I move to the side, out of the flow of traffic. I close my eyes, take a few deep breaths, and wait until I can recover. Inside the door of my house, I have placed a stool that I can sit on and let the recovery happen.
I have found that asking for help is an important tool. Many bus drivers have helped me get where I needed to go! In the winter months it is harder to travel on my own, so I wait for warmer days or when someone can assist me. I find the anti-slip spiked shoe covers work best on snow and ice, and it is so important to wear the proper winter attire.
I learn something each time I go it alone – it is very much a work in progress. As my vision deteriorates, I know I will need to employ the help of a guide dog or cane, but for now I am making my way in the world.
Also, I have come across something that – if it works – may help with my photosensitivity quite a bit. It is called a partial occluder contact lens. The center of the contact lens that covers the pupil is a gray tint that is available in a variety of percentages of light transmission. My doctor is checking it out for me, and I’ll be trying them out very soon. I’ll be glad to report back to our readers about how this potential solution works out for me.
MD: We look forward to your update, Leann, and we thank you very much for sharing your hard-won expertise with our readers. If readers have additional questions, helpful hints, or resources, please feel free to share them in the comments section.
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