Seeing Beyond GA

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Rob Howden, a passionate golfer, has been navigating life with age-related macular degeneration (AMD) and Geographic Atrophy (GA) with resilience and determination. His journey began in March 2013 when a blinking digital clock in the middle of the night prompted him to seek medical advice, leading to his diagnosis with AMD. Initially, Rob felt isolated, not knowing anyone else with AMD. However, he eventually met others at his golf club and joined a local support group, finding comfort in shared experiences and a sense of belonging, proving that no one has to face vision loss alone.

“It’s very important to me to know that I’m not alone with this disease,” says Rob. “When I was first diagnosed, I felt like the loneliest person in the world. But since then, through groups like the Foundation Fighting Blindness and even Facebook groups, it’s just really nice to know you’re not alone.”

Initially, Rob’s AMD was a minor inconvenience, but in more recent years, his condition has progressed, significantly impacting his ability to read, watch TV, drive, and enjoy golf like he used to. But Rob has found ways to adapt using technology and continues to live an active lifestyle.

Living in the northern suburbs of Chicago, Rob relies on rideshares for transportation to doctor’s appointments and other activities. And over the years, he’s built a community of supporters, including his friends and neighbors, who provide invaluable help, from giving him rides to taking him grocery shopping every Saturday.

Rob has been playing golf since his twenties, and his friends play a crucial role in his golfing experience today as well, helping him with directions, driving the golf cart, and keeping score. More recently, Rob has developed a unique technique to "see" the ball without looking directly at it, placing another ball nearby to use his peripheral vision. This adaptation extends to other aspects of his daily life, such as putting toothpaste on his toothbrush or buttering his toast.

A couple of years after his initial diagnosis, Rob learned he had GA, a more progressed form of AMD. This revelation motivated him to research treatment options and take control of his journey in any way he could. Rob strongly believes in the importance of being proactive and exploring available treatments, including clinical trials and drugs that can slow the progression of GA.

“When I was diagnosed in 2013, for the next 10 years, there was nothing my ophthalmologist could do but watch my AMD get worse,” Rob recalls. “Now I feel like I can finally fight back, and there’s a chance of slowing this down.”

Rob now receives treatment for his GA and wants others to feel empowered to be proactive and explore these options, too.

“Be your own advocate and take action against this disease now,” says Rob. “Sign up for a clinical trial or talk to your retinal specialist about what else you can do now. Unlike when I was first diagnosed, there are actual drugs on the market that will slow down this disease progression, so that’s the most important thing you can do.”

This Beacon Story is sponsored by Apellis Pharmaceuticals.