Community Views: Was Your Macular Degeneration Diagnosis a Surprise?

When it comes to macular degeneration, the road to diagnosis looks different for everyone. Receiving a diagnosis can be emotional and difficult, for a variety of reasons. This can be especially true for the many people who are completely surprised to learn they have macular degeneration.

Sharing macular degeneration diagnosis experience

To find out more about what your diagnosis story looked like, we reached out to our Facebook followers and asked:

“Did your macular degeneration diagnosis come as a surprise to you?”

More than 100 of you commented, and here is what you shared.

No family history of AMD

“Yes. There was no family history of it.”

For many who answered yes, the diagnosis was largely a surprise because nobody in the family had had it. However, macular degeneration does not affect only those with a family history of the disease. Environmental factors, from diet to smoking, can also play a role.

“The diagnosis was a big surprise. My long-lived older relatives did not have it. Although I went yearly to my ophthalmologist and had cataract surgery, I was never shown a graph to see if I had distortions. I had symptoms for 6 months before I was sent to a retina specialist. I still feel some anger about that and wonder how many people go to eye specialists regularly but are never shown the simplest test for AMD.”

“Yes. There was no family history of it.”

“Yes! I was only 41 when I got the diagnosis.”

Macular degeneration can effect people in their 20s, too

For others, the surprise came largely because of their age at the time of their diagnosis. Macular degeneration is more common in older people, especially those who are in their 60s. It is understandable why people who are much younger than that are caught off guard by their diagnosis.

“Yes! I was only 41 when I got the diagnosis. I had heard of AMD before, but had no idea it could start so young.”

“Yeah, only because I had 29 years of what I would consider pretty good vision. Within a year it just went haywire, and I have no known history of MD in the family.”

Know your family history of macular degeneration?

“Yes. I did not know that we had family history.”

Some people were taken by surprise because they only learned about their family history of macular degeneration after their own diagnosis.

Finding support in your family

It is a smart idea to talk to your relatives about your family medical history. This way, you can gain as much information as possible about how the disease has and has not affected others. Those of you with a family history also suggested turning to a retina specialist who has experience with macular degeneration.

The importance of family history

“Yes. It was totally a surprise and I was in shock, even though my mother had it. My optometrist misdiagnosed me and told me I did not have it, but later that very day, he took my file over to the retina specialist. They called me and asked me to come in right away, and that day I had my first injection.”

“Yes. I did not know that we had family history. My mom never told me she had it.”

“No, my mother and grandmother had it!”

Genetic factors effect macular degeneration

While some community members were surprised by their diagnosis, many of you knew you were at risk for macular degeneration. Having a genetic link to the disease prepared you for what was to come. In fact, several community members shared that multiple family members lived with macular degeneration, making it even more likely that they too would get the diagnosis.

“No, not a surprise because my grandmother had it and I have had really bad eyesight my whole life. The only surprise was I was diagnosed sooner rather than later, as I am 41.”

“No, my mother and grandmother had it! Both were legally blind at death!”

“Not really, since my mom was legally blind from macular degeneration when she died at 83.”

“No. I had a DNA test a few years before my diagnosis and it was a 50/50 chance I would get it. Besides, the odds were against me, as my mom and dad both had it.” 

Share your diagnosis story

Thank you to everyone who shared details of their diagnosis story. We appreciate hearing such a variety of input.