Navigating an “Invisible” Illness: Ron’s Story

I was diagnosed with age-related macular degeneration in 2013.  

I had a lot going on that year. As a financial planner and tax advisor, I had several big deadlines looming. My wife and I had a trip coming up in May, and we were planning our daughters’ wedding. I remember being at my computer working on taxes and noticing that my right eye was blurry. Previously, all I’ve ever needed was a new prescription. So, I delayed it.  

That was January 2013. I got through tax season, we went on our trip, my daughter got married, and then a few things came up toward the end of the year. Finally, at the beginning of December, I went to the eye doctor thinking I needed new glasses. 

They said it was age-related macular degeneration (AMD). It turns out I had wet AMD in my right eye and dry AMD in my left, which wasn’t as serious as the wet. Had I gone in immediately, my right eye probably wouldn’t have progressed as badly. 

Over the next 10 years, my left eye worsened. I had to enlarge text to read it and get a bigger screen at work. I started letting my clients know that I have visual impairment and might not be working as quickly.  

In October 2021, my left eye took a turn for the worse. I thought it was wet AMD, but when my doctor did the retinal scans, it showed that I had acquired vitelliform lesions in that eye. That’s a retinal disease where round, yellowish deposits collect under the central retina or macula and cause thinning and atrophy of the retina.  

The good news? My doctor said that once the sight gets worse, then it usually progresses more slowly than AMD.  

I stopped working about a year and a half ago because of my vision. I use my iPhone to see faces when people are further than 10-12 feet away. I don’t do this all the time, but mostly in meetings. In normal social situations, I struggle to try to recognize people I am not familiar with. I can recognize friends and family by their body shapes and head shapes, and I can glance at some features.  

I still can drive, but I don’t drive at night. I know my limitations and I don’t drive on the freeway more than 65 miles per hour. It’s also easier for me to drive on surface streets when I’m going slower. If there are a lot of trees and shade pools on the street, it’s harder to see and distinguish things. I know to slow down. I haven’t ridden a bicycle in a couple of years because I get worried about falling. I worry that I might not see something.   

I’ve tried both Vabysmo and Eylea HD and can go three or four months between injections.

Finding Support  

It’s challenging to not have full independence. Being self-employed and having a type A personality, I do a lot on my own and am independent. My wife is fantastic. She’s always there to give me a ride places, but sometimes I feel guilty always asking for help. When we go on trips, she has to do all the driving.  

I’m very fortunate that in San Diego County, where I live, there is San Diego Service for the Blind and Visually Impaired. They’ve helped me out a lot, including mapping my eyes to determine where my best vision is. I have magnifiers and use accessibility features on the iPhone and iPad. I have a projection machine where I can put books and newspapers and enlarge them onto a 27” screen. I also listen to a lot of audiobooks.

Helping Others 

I enjoy helping others who have macular degeneration. A friend of my wife has it and was getting depressed. I invited her over to the house and showed her all the things I do. It made me feel good because she said, “I don’t feel like my life is over now. I see all the things I can do to help my vision.” I recommended she attend BrightFocus Foundation’s AMD Community Circle, which I also attend. 

In the Community Circle group, I learned about Eyedaptic glasses, which are lightweight glasses that hook onto a Samsung phone, that you can use to watch TV or read. I take notes. In the last meeting, someone brought up NoIR low vision eyewear that fit over prescription glasses. I like to hear how other people deal with this.

Raising Awareness of an “Invisible” Disability 

Some people who don’t have age-related macular degeneration try to compare my vision to when they need reading glasses. It can be annoying to me that they don’t understand. If I lost a leg, they’d see that I’d lost a leg and understand that disability. But they can’t tell anything is wrong when they look at me. One friend said that my eyes looked fine. I wish they could see what I saw.   

It’s important for people with AMD to understand in detail what’s going on with their eyes. A lot of people don’t necessarily know. AMD is not a static disease; you must continually monitor your vision and let your doctor know if anything changes.

Editor’s note: The Amsler grid is an at-home tool that can help detect early signs of retinal disease and monitor changes in your vision after diagnosis. Learn more. 

About BrightFocus Foundation  

BrightFocus Foundation is a premier global nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs — Alzheimer’s Disease Research, Macular Degeneration Research, and National Glaucoma Research — the Foundation has awarded nearly $290 million in groundbreaking research funding over the past 50 years and shares the latest research findings, expert information, and resources to empower the millions impacted by these devastating diseases. Learn more at brightfocus.org. 

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