My Macular Degeneration Journey

In 2017, I went to my optometrist for my annual exam. I wasn’t experiencing any symptoms.

After peering into my eyes, he said he saw something that didn’t look normal and wanted to do a optical coherence tomography (OCT) scan. The results showed the presence of drusen.

He told me I had early-stage dry age-related macular degeneration (AMD). He said he would check it again in a year. Learning I had macular degeneration wasn’t a huge surprise, since my mom and sister both had wet AMD.

Developing a treatment plan

I still had no symptoms a year later at my annual eye exam. I asked for a referral to the retina specialist my family used. I was concerned about developing wet AMD and wanted to be under the care of a retina specialist.

My doctor told me there was no cure for AMD and no treatment. He did recommend I take AREDS2 eye vitamins, because he said studies indicated they may slow the progression. He also suggested I use the Amsler grid to monitor changes in my vision.

My own research led me to make some lifestyle changes that may further slow the progression. I try to follow the Mediterranean diet, exercise, and protect my eyes from the sun.

Dealing with disease progression

As the years passed, I began having symptoms. At first, it was blurred vision. I really noticed it when driving. I started wearing polarized sunglasses that helped reduce glare and improve clarity.

I noticed the lines on the Amsler grid were wavy and that I had a dark spot in the center of my vision in the right eye. I could see through the spot, but it made it much harder to read or do the crafts I loved.

Informing my retina specialist of new symptoms

A new symptom, a form of double vision called a ghost image, has made driving a bigger challenge in the past year or so. I notice it while watching TV and especially when I drive. Cars I meet all appear to have a double set of headlights. Sometimes I see 3 distinct sets of lights and the cars appear misshapen.

I saw my retina specialist recently and told him how much worse my symptoms are now. He looked at the OCT scan and explained I had now progressed to geographic atrophy in the right eye. Cells are beginning to die off and will lead to the loss of central vision. My doctor will now check my vision every 4 months to monitor the progression.

Taking care of my mental health

I credit my mostly positive attitude to 2 things: my faith and my ability to adapt to change.

My faith in God, study of scriptures, and prayer lead to less stress and worry about my future loss of vision.

I have always adapted easily to changes in my life. AMD has required lots of adaptations. I use various aids to help me. Magnifying tools, accessibility features on my iPhone and iPad, and brighter lighting all make my life easier.

I feel confident that whatever happens with my vision, I can still lead a meaningful life.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).