Community Interview: Susie's Geographic Atrophy Story
MacularDegeneration.net recently talked to Susie, a community member living with GA, who kindly shared her story with us.
The diagnosis process
Q: When were you diagnosed with dry macular degeneration? How quickly did it progress into geographic atrophy? How did you feel during and after the diagnosis?
Susie: I have given this question a lot of thought, and the best answer I can give is, "I don't know." However, this response warrants an explanation.
When I was first diagnosed with this eye condition, I was simply told that I had macular degeneration. No further explanation was given. The retina specialist recommended I begin taking AREDS2 vitamins and return in 6 months. I am an educated person, and it's embarrassing to me that I never asked questions.
In hindsight, I believe it's because my father and 4 older sisters had the condition, and at that point, they seemed fine. I hadn't even heard of wet or dry MD, let alone geographic atrophy.
Fast forward 10 or so years, when my vision began to change and those squiggly lines began to show up. At this point, I had changed doctors. When I reported that telephone poles and highway lines were curvy and/or had pieces missing, yet the Amsler chart lines still seemed straight, she offered no explanation, nor did she seem alarmed.
I was also seeing my ophthalmologist yearly and had plans to have cataract surgery. Off the cuff, I asked him what kind of MD I had, to which he replied GA. He showed me the blind spots on my pictures. During my next visit to my retina specialist, she confirmed the diagnosis. After consultation with my regular eye doctor, I decided to proceed with the surgery and chose the laser surgery.
Although no one explained that blindness was somewhere in the future, I figured my vision needed all the help I could get and paid extra for the laser procedure. Within 6 months, I had surgery on both eyes and received a new prescription for glasses that gave me 20/20 vision in my good eye (which was showing signs of GA) and maybe 20/50 in my bad eye. I felt like I was doing everything possible to live a normal life.
Q: What were some initial questions you asked your doctor once diagnosed with GA? Did your doctor provide you with actionable steps for managing your GA? How often do you visit your eye doctor?
Susie: Once diagnosed with GA, I didn't ask many, if any, questions. But I did go home and begin researching my condition (finally!). No actionable steps were given by either my ophthalmologist or retina specialist. I see the opthalmologist yearly and my retina specialist every 2 months now that I am getting injections of Syfovre.
Life with GA
Q: What symptoms do you experience with your GA (e.g., faded colors, trouble reading, trouble driving)? Has anything helped you manage those symptoms?
Susie: I have difficulty explaining my vision in my bad eye. I can see well enough because my good eye is dominant. But to answer the question, it is like I have areas that are blank, or pieces missing out of a post or tree. Sometimes it is like looking at raindrops on a windshield – a distorted image that you can't make out. I don't notice these symptoms unless I close my good eye, which I do occasionally to "test" myself.
I can read as long as I use my phone, iPad, or Kindle. The backlit print is fantastic. I can read some labels and some print as long as it is not gray and/or is large. A magnifying glass with a light is also helpful when those directions are just too small. What I find interesting is that, on my phone, I have no trouble reading even small print because of the phone lighting. My vision fluctuates during the day depending on how much time I spend on my devices. And I have no trouble driving – yet.
One other caveat: Even though I have "blind spots," I still have vision in my bad eye. In fact, if I focus beyond the spots, there is clarity equal to or better than my vision in my good eye.
Everyone is different, and explaining it is difficult. Perhaps my attempts will help them realize they are not alone in describing their vision.
Q: Have you had to make any lifestyle changes (nutrition, exercise, etc.) or adaptations or changes to your environment (accessibility tools like magnifiers, lights, etc.) to live better with GA? What were those changes or adaptations, and how well have they worked for you?
Susie: I continue to take my vitamins daily and receive injections of a recently approved drug for treating GA every other month in my good eye. I use large handheld magnifying glasses if I want to read something printed. If I don't have a magnifying glass with me, I use the magnifier on my phone. I switched to a Kindle that is backlit. I use my iPad for social media or reading. I have enlarged the print size on my phone and can make it bigger in the future when it becomes necessary. These devices are a lifesaver.
One sister had wet MD. She, too, was a bookworm, but the devices she qualified to read with were bulky with print so large that very few words could be read at one time. On a whim, I took out my iPad, opened a book, and kept enlarging the print until she could read. I can't express the joy we both experienced at that moment.
"Don't lose hope"
Q: If someone recently diagnosed with GA asked you for words of encouragement, what would you say?
Susie: I would encourage them to research the condition if they can still read; ask for information about GA, and discuss present treatment as well as what is in the works. There is so much research taking place that I feel confident that eventually a cure or a way to stop progression – or even a reversal of the damage done – will happen.
In other words, don't lose hope. Two years ago there was no treatment for GA, and now injections are available to slow the progression.
Q: Is there anything else you would like the community to know about you or your journey?
Susie: Although I'm in a good place regarding my vision, it's hard for me to accept that it will get worse. I'll adapt as necessary while keeping my fingers crossed as I hold out for newer and better treatments in the future.
Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).
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