Why Didn’t Someone Tell Me BEFORE It Was Too Late?

Many people who are diagnosed with macular degeneration don’t know much, if anything, about it before getting that shocking news in the doctor’s office. And, once the news is delivered it seems like it's more common than not that we either get information overload (completely overwhelming) or extreme lack of information (frustrating, and dangerous!).

An overwhelming vision loss diagnosis

This is really tragic for so many reasons.

1. First of all, it’s extremely frightening to hear you have macular degeneration because it’s usually followed by some form of 'your vision loss is irreversible and there is no cure.' Or, if you have wet AMD, you may get told that there are injections that you can endure to help preserve vision. Can we say scary?
2. Secondly, it’s confusing. Wet? Dry? Drusen? Scotoma? Irreversible damage? Huh? Also, there are so many questions that accompany a diagnosis of macular degeneration. Like the biggie, "Am I going to go blind?"

Knowing the risks of macular degeneration

All of this is really unfortunate simply because in many cases, prior knowledge could ease a lot of these worries and early detection is key when it comes to vision preservation. Recently, MacularDegeneration.net asked our community what we wish we would have known before being diagnosed and the answers really got me thinking...why doesn’t anyone tell us the risks of this disease BEFORE it’s too late?

Talk about macular degeneration more

Macular degeneration is so common that I personally think it deserves regular conversation in doctor's offices...BEFORE it's too late. In this article, Health Union's editorial team explains the prevalence of macular degeneration:

"By 2020, an estimated 196 million people worldwide would be affected by AMD. AMD is the top cause of visual disability in the developed world, and the third cause worldwide. [And] the yearly healthcare cost of AMD in the U.S. are $255 billion, making up almost half of all costs related to care for vision loss."

Why aren't more people aware of this BEFORE being diagnosed? Wouldn't knowing beforehand be a simple way to start taking care of our eye health in an attempt to prevent or postpone the disease and tragedy of vision loss?

Why does it matter?

Knowing our risk for macular degeneration before a diagnosis could be beneficial for so many reasons. We could be more proactive with how we care for our eyes. Here are a few ideas we heard from readers:

• Make wearing sunglasses a priority! Janie C said, “I would’ve made absolutely sure that I always wore sunglasses!”
• Block out blue light on electronic devices. Lin O states, “Use blue-blocker lenses EVERY time you use a computer!” You can also eliminate blue light from many devices manually now as well.
• Say no to tobacco! Linda J says, “Don’t smoke!”
• Eat healthier/eat based on the Mediterranean diet. In our community here at MacularDegeneration.net, we share ways to eat healthier for the health of our eyes. Member Beverly P urges her husband to read articles on nutrition saying, "Read the comments, I didn't know diet was so important with MD."
• Take vitamins. Though we all have different needs when it comes to supplementation with vitamins and react differently to them, taking vitamins can really help us keep our eyes in tip-top shape! Linda D explains, "I've been taking vitamins for eight years. My MD is controlled."
• Stress less and exercise more. Judi B sees the benefit in this, "I'm my husband’s caretaker. Stress is shooting my systolic BP up. Not my diastolic! Gotta do the no salt thing, cardio exercises and crank it DOWN. I have to take care of myself." Judi knows her needs and the importance of taking care of herself.
• See a retina specialist, not just an optometrist or ophthalmologist. Margaret G explained, “I knew something more was going on than what the ophthalmologist said, but I didn’t trust my gut...I could have kept much more central vision in my eyes if I’d seen the retina specialist sooner.”
• Appreciate all of life’s moments and be grateful! Carolyn S urges us all to, “Enjoy life...period.” And Tina A reminisces, “I would tell myself to drive as much as possible because I can’t anymore.”
• Know that macular degeneration exists. Cathy B urges, “Know there is such a disease and take precautions.”
• Find a supportive community to gain information and feel understood. MacularDegeneration.net community member, Jan C expresses the importance of community, “You just made my day. I have been so scared. Now I’m not so alone. Thank you for your post.”

Know your genetics and family history

Have conversations with your family members. It's important to know if anyone in your family has a history of macular degeneration. And if you have macular degeneration, please be the advocate for your family.

It’s simple to have a DNA test to find out your macula risk! Your retina specialist, optometrist, or ophthalmologist can perform a simple cheek swab for you. It’s important to note that these tests are only relevant for 10 years out. If you are young when you have the test done, you may need to consider doing it again each decade.

Get your eyes checked annually

Some people see an optometrist or ophthalmologist yearly because of the need for corrective lenses. For those of us that do that, our doctors may be able to ‘catch’ any drusen or changes in our eyes that would indicate possible macular degeneration. For those that don’t need corrective lenses who may not see an ‘eye doctor’ regularly, they may not catch these symptoms until they’re already deeper into the disease than they realize.

Peggy K reminds us all to, “Make sure you get your eyes checked often no matter how ‘good’ your eyes seem." Who knows how much vision preservation we could do starting these habits earlier in life? Early detection is key! Spread the word!

What can we do to help bridge the gap?

Spread the word! Tell everyone you know and care about that there is this ‘thing’ called macular degeneration and inform, inform, inform! Slide the information in any way you can! How about, “Hey, friend, I got your kiddos some super cute sunglasses for their birthdays this year! Here’s why…”

And, of course, as the macular degeneration guru in your family, be the one who makes sure each and every family member knows that it can be hereditary! Don’t forget to explain the importance of them knowing NOW...before it’s too late. All of their children and grandchildren and their children’s children and grandchildren will someday need to know! Get a megaphone if you have to (kidding, sort of)!

A little advice

Here are two small pieces of advice that I would tell myself if I could go back in time to when I was first diagnosed:

Take notes at doctor's appointments

First, when I started seeing my retina specialist I remember feeling like they were giving me so much information and saying so many big words that were hard to remember. I started bringing something with me to take notes so I could write things down. If you forget pen and paper, you can always take notes on your cell phone or even voice record your visit for future reference.

Advocate for yourself

Most importantly, advocate for yourself! Always. If you have a question, ask it. Don't feel rushed in your retina specialist's office because they seem busy. They are. But, that doesn't matter because YOU matter. If you don't like what you hear or don't feel like your questions were answered, you have every right to seek a second opinion. These are your eyes you're advocating for, this is your vision.

Spread the word,

Andre Junge