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Diagnosed with Macular Degeneration? Here's What to Expect

Joshua Dunaief, MD, PhD

Scheie Eye Institute, University of Pennsylvania

  • Expert Advice
Published on:
Elderly woman with healthcare professional sitting in a living room.

Many people are frightened of losing vision or going blind when they are told they have macular degeneration. Fortunately, most patients with macular degeneration can keep good vision for their entire lives, and even those who lose their central vision almost always maintain their side, or “peripheral” vision.

Spots in the Retina

When first diagnosed with macular degeneration, in most cases you will have either no symptoms or a mild decrease or distortion in central vision. The diagnosis is made when the eye doctor sees tiny white spots in the retina when looking into your eyes with an ophthalmoscope. These spots are called drusen, which means “pebbles.” They represent tiny deposits of cellular waste products and immune system proteins. The doctor may then take several types of pictures of your retina to record its current appearance and to help determine whether there’s any worsening in the future.

Antioxidant Vitamins

If you have early macular degeneration and at least a minimum number and size of drusen, you will be told to take certain antioxidant vitamins. A large clinical trial called the Age-Related Eye Disease Study 2 (AREDS2) showed that a mixture of lutein, vitamin C, vitamin E, zinc, and copper can reduce the risk of progression to advanced AMD by 25 percent. While there are many types of eye vitamins on the market, only those that use the “AREDS2” formula have been proven effective.

Lifestyle Changes

Modifications to your lifestyle can also reduce your risk of macular degeneration progression. If you have any form of macular degeneration, you will be advised to eat lots of fruits and vegetables, and fatty fish (salmon, tuna, sardines, or mackerel twice a week). Smoking is a major risk factor, so smoking cessation is critical. Evidence also suggests that excessive simple sugars or red meat are also risk factors. Sunglasses are advisable when out in bright light.

Home Tests: The Amsler Grid and the ForeseeHome® Monitor

If you have early macular degeneration, it may progress to advanced stages. It’s important to detect this change, if it occurs, because early treatment can be helpful. You should see an ophthalmologist at least once a year and should check your vision at home with a graph called an Amsler grid. Check each eye independently by closing one eye and looking at the dot in the center of the grid while wearing your reading glasses. If you see any missing or wavy lines on the graph that are worse than before, call your ophthalmologist.

The ForeseeHome Monitor® from Notal Vision® is the first FDA-cleared device for patients with dry macular degeneration to monitor the disease at home. It is now a Medicare-covered service for patients enrolled in Medicare across the U.S., and who meet the eligibility criteria for dry macular degeneration at high risk for converting to wet macular degeneration. The device is designed to be used daily and takes approximately 3 minutes per eye. When used daily, the ForeseeHome Monitor detects changes before a patient would notice, and allows the doctor to monitor for any vision changes that take place between regularly scheduled exams. In a clinical trial that involved over 1500 participants, the device demonstrated that 87-94% of users maintained 20/40 vision or better at the time of wet macular degeneration detection, compared to only 62% of those who used conventional methods such as the Amsler grid. Vision at this level is significant because vision that is better than 20/40 allows patients to maintain their usual level of independence. They can read, maintain their driving license and continue to function at a very high level. A separate monitoring center processes each test and your prescribing doctor receives a monthly report. If there is a deviation from the usual testing, an alert would be triggered that would inform the prescribing doctor of a change that may be suggestive of wet macular degeneration. The prescribing doctor would then do a complete eye examination to assess if there has been a change to wet macular degeneration. To learn more, please visit ForseeHome's website

Advanced Wet and Dry Macular Degeneration

If your macular degeneration progresses to advanced “wet” macular degeneration, it means that new, leaky blood vessels have grown into your retina and are damaging your vision. These vessels can be halted by injections of “anti-VEGF” medicines (Beovu®, Eylea®, Lucentis®, Avastin®, or Vabysmo®) into the eye every month or two. Your ophthalmologist will determine the required frequency by monitoring your progress with exams and retinal photographs. These injections may improve your vision and are very likely to help prevent you from losing more central vision. Researchers are exploring longer-lasting treatments.

If your macular degeneration progresses to the advanced “dry” form called geographic atrophy, which involves the slow, progressive wasting away and death of cells (atrophy) of the central retina with expansion of a central blind spot, then you may qualify to enroll in a clinical trial. The first treatment for geographic atrophy was approved in February 2023; there are several other promising treatments in clinical trials. BrightFocus is funding innovative research into new drugs and ways to manage and treat this complex form of AMD.

Low Vision Specialists

If you have lost a significant amount of central vision, then you should visit an optometrist called a low vision specialist. These specialists will provide advice regarding appropriate magnifiers and lights to help you make optimal use of your remaining vision.

Heredity and Prevention

Macular degeneration is partially hereditary; you inherit risk genes. However, there is currently no benefit in testing for these genes because the results don’t change prevention or treatment recommendations. Your children are at moderately increased risk of macular degeneration and should adhere to the anti-macular lifestyle mentioned above, but AREDS2 vitamins are only recommended for patients who have developed macular degeneration.

Does Macular Degeneration Necessarily Lead to Blindness?

Not everyone with early macular degeneration will develop advanced macular degeneration, and not all those who develop an advanced form of the disease develop total blindness. However, the loss of central vision can significantly interfere with everyday activities, such as driving or reading. Learn more about current treatments for macular degeneration and BrightFocus Foundation’s Macular Degeneration Research-funded projects to find a cure.

How Quickly Does AMD Progress?

The disease can progress slowly or quickly depending on several factors, including whether someone develops the wet or dry form. See more facts about macular degeneration.

About the author

Headshot of Dr. Joshua Dunaief

Joshua Dunaief, MD, PhD

Scheie Eye Institute, University of Pennsylvania

Joshua Dunaief, MD, received his BA magna cum laude in Biology from Harvard (1987), MD/PhD from Columbia College of Physicians and Surgeons (1996), completed ophthalmology residency at the Wilmer Eye Institute, Johns Hopkins in 2000, and medical retina fellowship at Scheie Eye Institute, University of Pennsylvania in 2004.

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