Ask the Advocates: Diagnosis Journeys

Each advocate's story is unique. One was misdiagnosed. Another only learned of her condition when preparing to receive cataracts surgery. A few had no clue what macular degeneration was before their diagnosis. Others expected this genetically linked condition to catch up with them.

Here, our advocates share their macular degeneration diagnosis journeys and share what they wish they knew pre-diagnosis. Whose diagnosis experience is most similar to yours?

The diagnosis

We asked advocates: What was your diagnosis journey? Was your diagnosis a surprise? Is there anything you wish you knew before your diagnosis? Is there anything you would have done differently if you knew more about macular degeneration before your diagnosis?

Myopic macular degeneration and Stargardt's Disease

Andrea

"I was diagnosed with myopic macular degeneration (MMD) at the mere age of 26. I noticed a blind spot (which I now know is called a scotoma) while driving to work one morning. Interestingly enough, I was also very newly pregnant with my first baby. My doctors originally thought that this blind spot had something to do with pregnancy hormones. To be cautious, my optometrist sent me to a retina specialist 'just in case.' Needless to say, I was shocked when I was diagnosed and began a rollercoaster journey of emotions and personal growth.

Prior to my diagnosis, I wish I knew many things! Specifically, I wish I knew how to eat better, that wearing sunglasses is extremely important for everyone, and that taking care of my mental health should be a priority. I know this probably wouldn't have changed my diagnosis, but it certainly could have made it easier to handle. And, who knows, maybe it would have helped to slow the progression of my disease!"

Debbie

"I was diagnosed in March of 2019 with myopic macular degeneration (MMD). Severe nearsightedness being the culprit here has taken me on a journey of injections every 6 weeks for the first year and a half. I guess you could say this has been an 'eye-opening' experience...

Realistically, I suppose knowledge is power, but I am unsure what I could have done differently. Since I am very nearsighted, this particular degeneration has a mind of its own. Perhaps being more proactive in eye care would have helped with regard to ultraviolet protection."

Tiffany

"I was diagnosed with macular dystrophy in 2009. I was previously having difficulty with my vision, and when I was pregnant with my daughter, I was able to access healthcare that wasn’t available to me before. I was later more accurately diagnosed with Stargardt's Disease. Since there is no treatment or cure for my eye disease, I don’t think I would have done anything differently prior to my diagnosis. It isn’t easy to prepare for a change you cannot expect. If anything, I would simply educate myself more during the earlier stages of my diagnosis."

Age-related macular degeneration

Linda

"Nine years ago, following cataract surgery, I was diagnosed with dry AMD. It was not a complete surprise since my mother was legally blind with dry AMD, and I have a cousin on my dad’s side with dry AMD who can no longer drive. Of 5 siblings, I’m the only 1 with AMD. Fortunately, none of us has ever turned from dry AMD to wet.

Thankfully, I have followed a healthy diet, am not overweight, and never smoked. This gives me hope that my condition may not progress as quickly as my mother and cousin, who both smoked and were not healthy eaters. Knowing what I know now, I would have been more sympathetic toward my mother’s vision challenges. I didn’t realize how bad it was for her and why she isolated herself. The only other thing I would do differently is I would have worn sunglasses to protect my eyes."

Sharon

"My diagnosis of dry macular degeneration was not too big of a surprise. Both my mother and my sister have wet macular degeneration. My dry macular degeneration in the right eye has progressed quickly to the intermediate stage. Currently, my vision is 20/80 in the right eye.

Before my diagnosis, I wish I had known that smoking was a strong risk factor for macular degeneration. I quit smoking 30 years ago, but I feel like the damage was already done. I also wish I had worn sunglasses."

Wendy

"It was 2013 when I was first diagnosed with dry macular degeneration in my right eye. This was done by my optometrist. Twelve months later, in 2014, she noticed the same condition developing in my left eye. The optometrist was happy to keep seeing me, but I decided to find a retinal specialist at that time. My diagnosis was upsetting but hardly a surprise, as both of my parents had macular degeneration, 1 with wet and 1 with dry.

I knew quite a lot about macular degeneration before my diagnosis because I had researched it for my parents. There was not as much information available then as there is now. I would have eaten more colorful vegetables, made sure I always wore my sunglasses outside, and tried to live a more healthy lifestyle overall."

Wet age-related macular degeneration and geographic atrophy

Cora

"I was only 58 when I was first diagnosed with very early macular degeneration. It was caught after my annual eye exam showed cataracts. Before doing the cataract surgery, the ophthalmologist referred me to a retina specialist who confirmed the diagnosis and okayed the surgery. Other than my age, it was no surprise, as my mother also had It.

I wish I had known the modifiable risk factors much earlier. That it’s not determined solely by our genetic makeup. I like to think I would have quit smoking sooner (or not started at all). Hopefully, I would have controlled my weight better, as well."

Richard

"Nine years ago, I simply went to my optometrist for new glasses. During the exam, he discovered shadows on my macula. I was referred to a retinal specialist who told me I had dry AMD in one eye and wet AMD in the other eye. He also told me that I would need injections in my eyeball! I was flabbergasted and very scared!

Fast forward 9 years, my dry AMD eye has advanced into GA (or geographic atrophy), and its vision is 20/400. My wet eye has endured over 80 injections and is now my 'good eye' testing at 20/30 to 20/40.

I wish I knew this disease was a 'slow-mover' and that it may be years or even decades before I would lose any central vision. I thought they were telling me I was going blind... and soon! Had I known I was at risk for macular degeneration, I would have embraced a Mediterranean-type diet sooner than I have. I also would have been more health-conscious and exercised more to maintain a normal BMI."

Your journey

A macular degeneration diagnosis, whether it's Stargardt's Disease, myopic macular degeneration, or age-related macular degeneration, can be life-changing. Find support, ask questions, and connect with others living with these conditions.

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 geographic atrophy (GA).