WHAT’S IT LIKE TO HAVE MAC DEGEN ANYWAY?
It’s difficult to find the words to describe this overwhelming and demoralizing disease that affects millions of people. According to the American Health Assistance Foundation eleven million people in the United States have some form of macular degeneration (expected to double to 22 million by 2050) and the total cost for low vision in the United States is in excess of $51 billion. The global costs are crushing.
So what is it like to have macular degeneration? I think the first word that comes to my mind is surprise. It’s surprising to find out that you can’t see things that other people can see. It’s a surprise when you first notice you can’t see the color of the birds at your feeder. It’s a surprise when you stumble or fall because you can’t see that dip in the sidewalk because your contrast is gone. It’s a surprise when you think you are about to hit the car in front of you because your depth perception is gone. It’s a surprise when you can’t read street signs or recognize one of your friends at the market.
And then I think comes the disbelief, the fear, the anger that this is happening to you and you are only in your 60’s. Although I was diagnosed at the age of 50 it was only in my early 60s that the disease progressed to loss of some central vision, color fade, loss of contrast and depth perception. What would I do for all the rest of my years ?
If you’ve looked at the Definitions page you will know that ARMD or Age-Related Macular Degeneration is the leading cause of vision loss in Americans 65 years of age or older. It is a progressive eye disease that causes deterioration of the macula, the central part of the retina. The dry type of the disease progresses slowly through three stages: early, intermediate and advanced. You may find that you need more light and eventually may have a large blurry spot in the center of your vision. Again this form of the disease progresses slowly.
And then there’s the wet type of the disease which can progress rapidly as abnormal blood vessels form and leak fluid into the macula causing more rapid damage. This was my diagnosis in my left eye in 2008.
Because there are no visible symptoms of this disease your friends and family may not realize or understand what you are going through. This is one of the hardest things to deal with and probably the easiest to remedy. Be PRO-ACTIVE – I tell people I have an eye condition that affects my vision. If you had a broken leg people would know but with a ‘hidden’ disease the easiest way to help yourself is to tell people about it. I’ve never had anyone refuse to help me and I’ve made some friends too.
Coming up next? More About Living With Mac Degen, Light Up Your Life and Your Low Vision Care Team