John's Story

When John went to see his eye doctor in 2014, he thought it would be a routine visit. The Jonesboro, Georgia, resident had been wearing glasses and getting annual eye exams for most of his life. However, this time he noticed something odd as he stared at the eye chart – a dark spot in the center of his vision. Concerned, his optometrist referred him to a retina specialist, who diagnosed John with wet age-related macular degeneration (AMD) in his right eye.

“It came completely out of the blue,” says John, now 72. “I had never even heard of wet AMD before. Neither had most of my family and friends. It's not something you ever hear about in African American communities.”

AMD is a disease that damages the part of the eye that provides sharp, central vision, which can lead to blindness when left untreated. It is a leading cause of vision loss among people 60 and older, impacting approximately 20 million Americans. AMD tends to run in families. Wet AMD is an advanced form of the disease that can cause rapid and severe vision loss.

“Wet AMD tends to affect white women the most, so sometimes there’s a misconception that they are the only ones who get it,” John says. “I want people to know that anyone can get wet AMD.”

While there’s no way to prevent wet AMD, there are things you can do to help keep it at bay: don’t smoke, eat a diet rich in leafy green vegetables, and most importantly, see your eye doctor regularly. The earlier AMD is detected and treated, the better the chances of slowing its progression and preserving your eyesight. Like John, many people don’t notice any symptoms at first and only discover they have it through a comprehensive eye exam. So it’s crucial to find an eye doctor you trust and get regular exams.

“Eye exams are just as important as physicals, just as important as dental exams,” says John. “If I had skipped that eye appointment, I never would’ve guessed anything was wrong, because my left eye was picking up the slack for my right.”

Since his diagnosis, John has been receiving injections to treat his right eye, which has stabilized his vision so that he can continue doing things he loves to do – fixing things around the house, cooking, and traveling with his wife, Connie. And while making out small print is sometimes a challenge, he’s still able to read and do computer work.

“John is very, very independent, and we stay optimistic about doing the things we love for as long as we can,” says Connie. “We just spent a week in Vegas to see all the Christmas decorations, we’re going to California soon to visit wine country – we’re not putting any of it off.”

John says that building a strong, two-way relationship with his eye doctor has also made a big difference in managing his condition. He made sure to find a retina specialist who answers all his questions and treats him as an active partner in his care.

“At every appointment we go through my scans together, she explains what she is seeing, and then we decide together on my treatment plan going forward,” he says. “We’ve been able to get me down from injections every eight weeks to every 12 weeks.”

John has also sought out additional resources and a support system to help him navigate day-to-day life with wet AMD. The first person he turned to was Connie, who has helped him research the condition and accompanied him to appointments since the beginning. They still sit down together and make a list of questions ahead of every visit, and as Connie drives him home, they discuss how it went.

“I’m a licensed psychologist, and lots of my patients don’t ask questions when they go to the doctor,” says Connie. “I’m always telling them how important it is to make the most of that 20 minutes and get as much information as you can.”

John also joined a patient support group through the nonprofit organization BrightFocus Foundation, where he can talk to other people living with AMD. He values these monthly conversations, although he’s noticed he doesn’t meet a lot of people who look like him.

“Often, I am the only African American man in the group, but we are working to change that,” he says. “I want African American communities to be more aware of wet AMD, so they don’t have to go from zero to one hundred like I did after I was diagnosed.”

John hopes sharing his story will help build this awareness and show that it’s important for everyone to be proactive about their eye health.

“Make sure you get your regular eye exams, ask questions, and talk to your doctor right away if you notice anything unusual,” he says. “If you are diagnosed with wet AMD, it sounds terrible at first, but there are treatments and options available to you. Know there is hope.”

Originally published by Genentech on May 3, 2023. Republished with permission.

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