Patient Voices: Coping with Age-Related Macular Degeneration and Geographic Atrophy

Imagine slowly losing your vision to a condition that you’ve never heard of. Two people living with geographic atrophy, an advanced form of dry age-related macular degeneration (AMD) that causes blind spots in their field of vision, are sharing their experiences as a way to educate and support others. 

Rob Howden of Illinois and Diane Marshall of California participated in a BrightFocus Macular Degeneration Chat on May 31 to discuss their diagnosis, what living with geographic atrophy (GA) is like, some tips for adapting, and a newly approved drug to treat it. 

Rob, who is retired from the information technology industry, was diagnosed in 2013 with age-related macular degeneration that has progressed to GA. “When I was diagnosed with AMD, I don’t think anybody in my family could even spell it,” Rob recalls. “Nobody had heard of this. I had no (family) history with GA whatsoever.”  

Macular degeneration is a disease of the retina, the back of the eye, that causes vision distortion and central vision loss. In some cases, it can progress to GA, a condition in which an area of cells in the retina waste away, or atrophy, and die. The body is unable to repair or replace these cells. 

The name geographic atrophy came about because the regions of atrophy look like a map to the doctor who is examining the retina. It can affect one or both eyes and causes about 20% of legal blindness in North America. 

Rob and Diane are among about one million Americans who live with GA. In February 2023, the FDA approved the first treatment for geographic atrophy, an injectable drug called Syfovre developed by Apellis Pharmaceuticals, and a second treatment, Izervay, was approved in August 2023.  

“My eyes became blurry”

Diane, a retired English teacher and high school counselor whose hobbies include photography and reading, was diagnosed with early stage dry macular degeneration in 2001 during a routine eye exam. Her vision remained stable until 2016, when it began to deteriorate. 

“My eyes became blurry, and it was more and more difficult to read anything,” she said. “That’s when I saw my retinal specialist again and he said, ‘You have geographic atrophy.’ I had never heard of it and said, ‘Oh, is that a good thing?’ and he said, ‘Well, not exactly.’ And so, that began my journey learning about geographic atrophy.” 

The cause of GA is largely unknown, although it can be an inherited condition. Diane believes her mother had undiagnosed GA many years ago. “I remember her turning her head always to look me,” she said. “I think she was using her peripheral vision.” 

In Rob’s case, he was visiting his mother in Arizona and cracked open an eye at night to look at a bedside clock. He saw a blinking LCD light, but when he lifted his head to look again, the clock wasn’t blinking at all. “I said to myself, ‘It’s not mom’s clock that’s going bad here. It’s me.’” 

Eventually Rob found he couldn’t play some of his favorite sports any longer. An avid sporting clay and trap and skeet shooter, he couldn’t see the target. Fishing for bass became an exercise in untangling his line from trees. He was dismayed when he could no longer clearly read, a favorite pastime. 

The decision to no longer drive 

The biggest issue for him, however, was driving. The turning point came when he hit a crossing gate at some train tracks—fortunately no train was coming—and then came close to hitting a construction worker. Today he no longer drives. 

“I would really emphasize to be very, very careful with driving,” Rob said. “It’s possibly the most dangerous thing we do.” 

Diane, too, has given up driving. “That was an amazing loss of independence,” she said. “Thank goodness for friends who were there to help, but it’s a big loss not to be able to get in your car and go.” 

As her vision deteriorated further, Diane’s concern grew. She could no longer comfortably read her iPad, watch TV, or use her computer. Her living room table was covered with different magnifying glasses, which sometimes worked and sometimes did not. 

Her optometrist could no longer correct her vision with glasses, and the last time her vision was measured, it was 20/200. She was legally blind. 

“It was at that point that I decided I really needed to do anything I could to slow down the progression, and so I had my first injection of Syfovre,” she said. 

New geographic atrophy treatments 

Syfovre, the first FDA-approved treatment for geographic atrophy, works by regulating an overactivated part of the immune system in the eye. By reducing the rate of GA lesion growth, the drug can slow the progression of vision loss. It’s an eye injection given in-office by a retina specialist who numbs the eye beforehand.  

Diane was worried that the injection would be painful, but her fears were unfounded. “Everybody said, ‘You are not going to feel anything,’ and I didn’t. There was no pain at all,” she recalls. “There was a little pressure, and it just felt strange—that’s all I can say. And I was fine afterward.” 

In August 2023, the FDA approved the second treatment for GA, an injectable called Izervay. Both treatments were shown to slow progression of vision loss caused by GA.  

How assistive devices have helped 

Diane and Rob point out that there are many assistive devices to support people with vision loss. Some that have helped them include: 

• Apple and Android phone apps that read text aloud and others that convert spoken words to text.  

• OrCam: a small device that clips on the side of eyeglasses and reads aloud whatever is in front of her. It also can identify faces once they are set inside the device. Because good light is important, Diane uses a wireless lamp called Stella GO.

• The Blind Life: A YouTube video series that shows life from a visually impaired perspective. 

• Audible, which offers audio books, podcasts, sleep sounds, and more. 

• Online resources from sites like BrightFocus Foundation, WebMD, and the Mayo Clinic 

• Hadley is an online resource that offers personalized learning opportunities for adults with vision loss or blindness. 

• Eyes on GA has a wealth of information about geographic atrophy. 

• Max TV magnifying eyeglasses, available through Amazon, help Rob watch television and see objects in the distance. 

Both said they have found extensive support from the BrightFocus Age-Related Macular Degeneration Community Circle, a monthly, virtual support group that provides a place where people with macular degeneration can join together to share tips, ask questions, and build community. 

“Vision loss can make you feel very vulnerable and alone, and it’s so important to connect with people who are dealing with the same vision loss,” Diane said. “It was vital to me. Don’t ever be embarrassed—although I have been—to ask for help, because people do want to help.” 

The importance of friendships 

With the help of friends, they said, they haven’t had to give up everything they love to do. “My friends are so unbelievably important to me,” Rob said. “On Tuesdays and Thursdays, I get picked up to play golf, and not only are they my ride, but they’re also my birddogs for wherever I’m going to hit that stupid ball.” 

Both said they regret not being better informed about GA when their vision loss first started to intensify. “I’m really glad that Apellis has come out with a drug that should help us,” Rob said. “I wish I had known 10 years ago that there was actually some help coming.” 

Diane thinks about a sign on her refrigerator that says, ‘You can’t prevent the bird of sorrow from flying over your head, but you can prevent it from building a nest in your hair.’ 

“Often there were a flock of birds in my hair laying eggs, and I had to remember something that I read,” she said. “Frank Rooney, the writer for the New York Times who lost his vision suddenly to an ocular stroke, wrote in his beautiful book, ‘The Beauty of Dusk,’ that even though bad things might happen, you have a choice about how you can handle it, and knowing that gave me back some sense of control in my life.”  

Diane’s advice for people with vision loss like hers is to “connect with others, ask for help when you need it, and don’t forget that you are far more resilient than you ever thought you could be.” 

Listen to a recording of the conversation with Diane and Rob or read the transcript. 

BrightFocus Macular Degeneration Chats are free, monthly audio discussions with doctors and vision experts. Learn more. 

You may also be interested in: 

• What is Geographic Atrophy? 

• Diagnosed with Macular Degeneration? Here's What to Expect 

• Tips for Moving Through the World with Low Vision 

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, National Glaucoma Research, and Macular Degeneration 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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