Community Views: You Should Understand This About AMD

“You will not go blind,” said my ophthalmologist. “That is the most important thing you need to know.”

Working with my retinal specialist

He said that as I was getting ready for my first injection of a state-of-the-art drug to stop the progression of age-related macular degeneration (AMD) in my left eye. Diagnosed just three days before, there was a lot I didn’t know including that he was not just an ophthalmologist but a retina specialist. His job and mine became taking care of the vision I have.

Since that day (and the post-injection ice cream treat that followed), there is a lot I have learned. Much of it I have shared with friends and even strangers.

What others should know

I am a believer in the idea that the more we know, the more in control we will feel and the less we will fear. That’s why I was particularly interested in the responses to a question posed to our MacularDegeneration.net community on Facebook: I wish that people understood macular degeneration ___________ (fill in the blank).

You came back with a range of answers from the very practical to the heart-wrenching...

It's tough

“...that my life is a living hell having macular degeneration it's basically over at 56 years old I wouldn't wish this on anyone.”

There were so many things I would like to say to the person. The first is that this diagnosis is tough. No matter how old you are. The second, of course, is to acknowledge that anger and frustration and pain and depression are common responses to the diagnoses and to knowing that there is no magic pill to go back to the vision we had earlier in life.

For many people, some form of therapy can help with the emotional impact. For others, it is time and support and a realization that this new life can be filled with joy and accomplishment.

By the way, ever since one Sunday in church I’ve avoided answering fill-in-the-blank questions. The preacher dramatically asked us, “What do you really want in your life?” I leaned over to my husband and whispered, “A pony.” Someone behind me stifled a laugh. Never have gotten that pony. I bet this person would ask for his vision to be restored.

The future holds promise

“It is not the end of the world.” Interesting that this was the second comment we received. The full response was “It is not the end of the world, that we will always have our peripheral vision.”

I would add, “We can find new ways of using that.” There are techniques that can allow you to train your peripheral vision to compensate for the loss of central vision. Retina specialists can point you in the direction of a local occupational therapist to help.

And, as this person said, the future holds promise. Researchers are exploring a gene therapy that will reduce the next for injections as the eye begins to make its own anti-VEGF protein. It won’t bring back vision but it will reduce the frequency of injections and protect the vision we have.

You don’t need to be eligible for Social Security to get AMD

Some people think you have to be old (over 60) to have AMD. Not true. People in their 30’s, 40’s and 50’s have AMD and are part of our community. That’s why everyone should get an annual eye exam especially if someone in the family has or had AMD.

It's not that bad

“Injections aren’t as scary as one would believe." Most people are really frightened about the idea of a shot in the eye. All those mothers telling us not to run with a stick because we’ll get a poke in the eye might have something to do with it. Once we learned, however, that those monthly injections which take far less than a minute, will slow the progress of the disease, we learn to live with them.

It's invisible

"AMD is one of those invisible diseases like hearing loss. No one can know you have it."

There are things we can do!

"There are things we can do" - Several people mentioned that it was important for people to know that there are things we can do to make living with AMD easier. The list begins with listening to their doctor, showing up for injections, taking special vitamins when recommended by their doctor, eating a healthy diet heavy on fruits and vegetables, and enjoying life.

Other perspectives

“Incurable and Unpredictable”

“Both are good reasons for enjoying your life and making lasting memories,” commented someone else. That’s good advice for everyone. We never know what can happen. There may be that proverbial bus heading our way.