The unexpected emotional burden of vision loss from geographic atrophy
Posted: May 18, 2022 | Word Count: 673
Liz Tully loved to read. In addition to reading for her own pleasure, she enjoyed helping others and would regularly meet up with a friend to read the newspaper out loud because he could no longer read it himself. Then, in her early 60s, something changed.
As she read the newspaper to her friend, her eyes would sometimes feel strained, and she would lose her place. She dismissed this thinking it was simply eye fatigue or old age. After visiting a new ophthalmologist a few years later, she was told she had macular atrophy, an early form of age-related macular degeneration (AMD). Five years later, in the Spring of 2020, she had a sudden and dramatic loss of vision in one eye and was told she had geographic atrophy (GA), an advanced form of dry AMD. She now has GA in her other eye as well. GA is a leading cause of blindness that impairs visual function, and therefore, independence and quality of life for the more than 5 million people who are diagnosed with the disease worldwide.
Liz had heard of AMD decades earlier through a chance remark from a cousin of her mother’s who said both she and Liz’s mother had this progressive disease.
Often, patients first recognize signs of AMD in daily life, as was the case with Liz, when she realized she was unable to read some words and letters on a page and had trouble recognizing friends at a distance.
The onset and progression of GA can take an emotional toll in addition to the physical one. A recent global survey conducted by The Harris Poll and sponsored by biopharmaceutical company Apellis found that, of the 203 patients surveyed, nearly seven in ten (68%) believe the impact on independence and quality of life due to their visual decline is worse than they had expected.
Furthermore, the study demonstrated that more than two in three patients (70%) rely on a caregiver for support, and a majority feel the disease negatively affects aspects of everyday life like the ability to read (96%), drive (95%), and travel (88%).
Liz has experienced many of the challenges those living with GA identified in the survey. However, she's learned to make changes to help navigate her new normal, such as finding strategies to cross busy intersections safely and coordinating with friends to bring her to doctor appointments. Although she loves to read, even large-print books take significant effort now. Not being able to read — whether it's a book or label on a product — is what she says is her biggest loss due to her GA.
Even on the most difficult days, Liz tries to stay positive and make adjustments so she can stay active and connected. She understands the importance of patience and allowing herself the time and grace to handle situations that might at first feel impossible.
Liz wants to share her story to empower other people with GA to do all they can to live fully despite their changing health.
"Find workarounds," she said. "You may not be able to do what you did before, but that doesn't mean you have to give it up altogether. Find a different way to volunteer or do a hobby you enjoy."
Liz also says it's essential to stay connected to your doctor.
"See your doctor regularly. Listen to your doctor and follow their advice. This is a very hopeful time and so much research is happening."
Liz also speaks openly to her friends and family about her condition, in hopes it encourages them to be advocates for their own eye health.
“So many patients overlook their declining vision, chalking it up to old age,” said Dr. Nancy Holekamp, director of retina services at the Pepose Vision Institute, St. Louis, Missouri. “I am hopeful that this survey is one way to encourage early and ongoing dialogue between patients and their optometrist or ophthalmologist, so patients can receive a diagnosis and understand any eye disease they may have as early as possible.”
Sponsored by Apellis