My Geographic Atrophy Journey

This is just me we’re talking about, OK?  Only 5% of those with AMD will decline into geographic atrophy (GA). This will be my account of what happened to me. I can tell you this: you don’t want it.

Geographic atrophy

First, what is geographic atrophy (GA) anyway?

• In a nutshell, it’s the advanced form of dry macular degeneration. It refers to regions of the retina where cells waste away and die, hence atrophy. The regions of atrophy result in a blind spot in the visual field.
• Typically, once GA starts, atrophy expands slowly over multiple years until central vision is lost and vision is about 20/200. (My GA eye is currently 20/400!) Remember, geographic atrophy does not affect peripheral vision!

Treatment

While there currently is no proven treatment for GA, there are ongoing clinical trials that hold much promise.

One such phase III (that’s right, phase 3!) trial by Apellis is targeting a complement protein called C3 and is showing promising results. Stem cell therapy, or cell replacement, is also being tested for GA.

You can find clinical trials for geographic at antidote.me or clinicaltrials.gov.

Great, but what can I do now?

Patients can benefit from increased lighting, magnification, and low vision devices that help with reading. Also, a low vision specialist or low vision rehab place can offer help and assistance.

How severely has GA impacted my daily activities?

Believe it or not, not much! I’m a 72-year-old guy, and my “good eye” has wet AMD and has received over 80 anti-VEGF injections over the last 9 years, and it has 20/30 vision still! (YAY!! Eye injections!) But I will list a few things that my low vision state has caused:

1. Driving, I don’t drive at night or on bad weather days. I use Google Maps with voice activation to navigate unfamiliar areas.
2. Reading, I really don’t read printed books or magazines, I still can, but it is laborious and causes me eye strain. I am still a truly voracious reader. I simply use my iPad or Kindle Oasis reader. I read 2 to 3 hours per day, every day. Goodreads and Book Bub track my yearly reads and I normally read 80 to 90 books per year. And that doesn’t even count my iPad and iPhone research for education and fun.
3. Reading menus and grocery store aisle signs, TV program descriptions are also a giant pain. But my wonderful wife helps me more than I can say.

Last thoughts on my GA

I am still in play. I am not defeated! My attitude remains good, really good. To give you an idea of how adaptable the human brain is, I sometimes cover or close my “good eye” and walk all around my house, back deck, and yard using only the peripheral vision in my GA eye.

That is how powerful peripheral vision is! The blind spot is just a small cone in my central vision and my RS told me that the GA in my bad eye has done its worst. I hope he’s right, I have no reason not to believe him.

So there you have it - like one of our MacularDegeneration.net members said, “it ain’t cancer and we’re not dead!” I hope that doesn’t sound too coarse, but there is some truth in it. I wish us all well on our low vision journey.