Community Views: Support for People Living With Dry Macular Degeneration

If you have been diagnosed with dry macular degeneration, you may be experiencing a range of emotions that include anxiety, confusion, sadness, or disappointment. You may be wondering what your next steps should be, what your treatment plan will look like, or how your diagnosis may impact your work, education, or relationships with others. You may also wonder how others with a dry age-related macular degeneration (AMD) diagnosis are coping or managing their symptoms.

We recently asked our Facebook community, "What is some advice you'd give to someone who was diagnosed recently with dry macular degeneration?"

Our community came together to show support and share advice for people newly diagnosed with dry macular degeneration. Here are some of the pieces of advice and personal experiences you shared.

Keeping appointments and sticking to a treatment plan

Several community members shared advice that included making sure you keep lines of communication open with your doctor, stick to your treatment plan, and try not to miss appointments.

"Keep your appointments with your ophthalmologist. Take supplements that are recommended. Educate yourself about macular degeneration."

"Take your supplements, and see your RS [retina specialist] regularly to catch changes early."

"Keep your eye appointments, as they will guide you through it and let you know when it’s time to start the eye vitamins. They will help to ease your fears and work with you."

"I’m 84, and I do what the doctors tell me. I seem to improve in all medical areas, so I basically follow doctors' advice."

"Check [your] vision with an Amsler grid and see your retina specialist."

"Keep every appointment and be alert for changes."

Paying close attention to symptoms and changes

Many community members mentioned the importance of keeping track of any changes in vision or other changes in symptoms and addressing them quickly with your doctor.

"My advice would be to be very diligent in things not looking as they should, and get to your doctor as soon as possible if you notice any changes."

"Beware of any change in your vision."

"Report any changes in sight right away. Do not miss appointments."

"See your [retina specialist] no more than every 6 months, preferably [more often]. My sister’s doctor put her on a 1-year recall, and by the time she noticed a change, it was too late."

"Be mindful of your heart health and any warnings of potential diabetes."

"My last visit I didn’t get a shot and was told to come back in 6 months. When I go back it will be a year and a half. I was told that if I see a notable change, give them a call."

Supplements and lifestyle changes

Taking supplements recommended by your doctor, as well as lifestyle changes like a healthy diet, may help slow the progression of the disease.

"Eat a healthy diet, take AREDS2, check [your] vision with an Amsler grid, and see your retina specialist."

"Increase dark green [vegetables], fish, take AREDS2."

"AREDS2 vitamins and lots of citrus. Grid chart every day."

"AREDS2 saved my eyes for 20 years. MD in both eyes at 77."

"My ophthalmologist had me start taking the AREDS2 formula right away."

"As everyone already stated — eye vitamins diligently. My retina specialist told me to take AREDS [twice] a day. Also, food is medicine. Fish with omega-3 and dark green vegetables a few times a week if possible."

Eye protection and assistive devices

Some assistive devices, like cell phone features and special glasses or sunglasses, can help protect your eyes and vision.

"Wear your sunglasses and a hat everywhere."

"Take your AREDS and wear sunglasses."

"Keep your phone flashlight handy!"

"Wear good sunglasses any time you are outside."

"Indoor/outdoor TheraSpecs^® glasses. A game changer if you wear them all the time."

"My GP prescribes me Systane^® eye drops for day and night."

"I had issues with double vision while driving, so I have prisms in my eye prescription that fixed that problem."

Support for people living with dry macular degeneration

It can feel isolating to live with dry macular degeneration. Community members at MacularDegeneration.net are here to offer validation and support.

"You are not alone!"

"All you can do is take it a day at a time."

"I hope they can find a cure to help everyone with AMD."

Thank you

At MacularDegeneration.net, we are so grateful for our community of supportive and helpful people. We thank you for sharing your advice and experiences, and we can't wait to connect again soon!