Dry Macular Degeneration is the Good Kind... Wrong!
I am no stranger to age-related macular degeneration (AMD). When I was diagnosed 8 years ago, my mom and sister remarked how lucky I was to have the dry form. In my ignorance, I agreed with them. As the years have passed I don’t feel so lucky.
Family history
For many years, I drove my mom and my sister for their monthly injections for wet macular degeneration. The nearest retinal specialists are located 110 miles away from where we live. On the drive back home Mom was always fine. For whatever reason she saw pretty colors in the sky.
My poor sister was miserable on the drive home with irritation from the betadine used to prep the eye for an injection.
Busting the myths
After living 8 years with dry macular degeneration, I have learned enough to bust a few common myths about dry AMD.
Myth 1
I have heard comments that because I have dry I won’t see wavy lines or other distortions. This is not true. Many of us with intermediate or advanced dry AMD see wavy lines when we look at the Amsler grid. For me, it’s only noticeable in the right eye. I have a dark blurry spot in the center of my vision. I also see wavy lines with the right eye.
As I am entering the advanced stage, I notice many changes when I drive. Poles briefly appear distorted and after a blink or 2 they appear straight once again. Signs are equally distorted until I am close to them. Sometimes I see a double image.
Myth 2
"You are lucky not to get injections." I would gladly take monthly injections if they could improve my vision or slow down the progression. My sister has 10 years or more of injections for wet AMD. She has excellent vision when compared to mine.
In March of 2023 those with advanced dry AMD, or geographic atrophy, finally have a treatment option, Syfovre. It involves a monthly injection. I am not quite sure if I am lucky I am not bad enough to qualify for it yet.
Myth 3
Many erroneously believe those with dry AMD will not lose their central vision or become legally blind. 10-15% will progress to wet AMD. Anti-VEGF injections are doing a great job of slowing down progression for many. My retinal specialist reminds me it’s always progressing even when undetectable on my scans.
I have learned that worldwide over 8 million people have geographic atrophy, representing 20% of those with AMD. Most likely geographic atrophy is in my future. I am still hopeful that a new treatment option will be developed to slow down my own progression. My retinal specialist assures me that clinical trials are underway to find a treatment at the intermediate stage.1
Conclusion
The truth is there is no good kind of macular degeneration. It is a progressive disease regardless of whether you have wet or dry AMD.
Equally true is that we live in a time for hope. Our fate may be quite different from the fate of previous generations before any treatment became available. I remain hopeful.
Lastly, I believe that should I become legally blind, I can still live independently with a little assistance from my wonderful family. Many people before me are doing just that and are my role models.
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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