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Geographic Atrophy: A New Phase Begins

Since I began working as an advocate and writer for the Macular Degeneration community, I have blithely written about the progressive nature of age-related macular degeneration (AMD). I say "blithely" because, while I was acknowledging the facts about AMD, I didn’t really believe it would happen to me.

My diagnosis of dry AMD

I was diagnosed 9 years ago with early-stage dry AMD. The first few years, I felt little impact on my daily life. Slowly, that began to change. I noticed details were blurry. I could no longer pay bills or reconcile my bank statements without the use of a magnifier.

At this point, my retina specialist told me I had reached the intermediate stage. The progression was so slow I didn’t realize it was happening. A year or so ago, driving became challenging. At my annual eye exam, my optometrist told me I shouldn’t drive at night. Next, I noticed I had a form of double vision. It is called "ghosting" because it is a faint image superimposed over the original. This makes other cars appear distorted until they get close to me. I now drive only in familiar areas.

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Identifying geographic atrophy (GA)

At my checkup this past April, my retina specialist noted a big change on my OCT scan. The normal hump I usually saw had flattened out. He explained cells were starting to die. I was so shocked I didn’t ask a single question.

Once I was home, I thought of all the questions I should have asked. He told me to return in 4 months, and I made sure to write down my questions so that I would not forget them at the next appointment.

Am I eligible for Syfovre?

At my most recent appointment, my top question was, "Do I have geographic atrophy?" The answer was yes. My doctor told me I have mild GA in the left eye and moderate in the right. I had no idea that GA has stages. Previously, I thought once you have GA, you were basically blind except for peripheral vision. Whew! I am so glad I still have central vision, even if it’s blurry and/or distorted.

Since I knew about Syfovre, the new treatment for GA, I asked if I was eligible for the treatment.1

He confirmed I was eligible, but he did not recommend I begin the treatment now. He said Syfovre could increase my risk of developing wet AMD.1

My doctor also told me that the treatment could even cause blindness in rare cases. He told me that he believed more treatments with less side effects would soon be available to treat advanced dry macular degeneration. He assured me that if I begin rapid progression, he would start me on Syfovre.

Slowing GA progression as much as possible

My last question was about taking curcumin, an active ingredient found in turmeric. Some recent research has been done on whether curcumin could slow the progression of dry AMD.2,3

My doctor gave me his blessing to try it. I am taking 3000mg daily, split into 3 doses. It may not help me, but I am willing to try anything that may help me preserve my vision. I am also taking 40mg of saffron and vitamin A in addition to AREDS2. All were approved by my doctor.

Having GA is a scary diagnosis. I feel I am doing all I can to slow it down. I am not recommending my regimen to anyone else. Supplements are not always appropriate and should always be discussed with your doctor.

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 GA.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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