How to Talk About Age-Related Macular Degeneration (AMD)
Medically reviewed by Christine L. Larsen, MD
If you've recently been diagnosed with age-related macular degeneration (AMD), even while you're still processing your diagnosis you're also likely trying to explain AMD to others. But finding the right words to help friends and family understand what's happening to your vision can be difficult.
What's more, even when you're talking to your ophthalmologist (eye doctor), you may struggle to find a way to discuss your experience in a way that makes you feel empowered instead of overwhelmed by jargon.
This article will explain how to talk about AMD with your friends and loved ones and how to best speak to your ophthalmologist. It will also give you the vocabulary you need to better discuss AMD and answers why it's essential to talk to others also managing AMD.
Talking About Your AMD With Peers
As you open up about your diagnosis, your friends and family members may pepper you with questions about AMD. Initially, you may not be too sure what to say. In part, this may be that you're not exactly clear on what's happening.
Before you try to explain this to anyone else, take the time to figure out how AMD affects you and how it progresses.
One of the most common questions is, "What exactly is macular degeneration?"
You can begin by explaining the nuts and bolts of the condition. In macular degeneration, the macula, the part of the eye that allows you to see fine details, gets damaged. The macula is part of the light-sensitive retina at the back of the eye. The retina conveys to the brain information on what you see and then interprets the information.
AMD is a degenerative disease that, if untreated, gets worse. In particular, central vision (responsible for reading and distinguishing faces) worsens over time.
You may also want to share how the condition has been affecting you and what they can do to make your life easier, such as giving you a ride to an appointment. Also, you may ask that they lend an ear as you try to determine the next steps.
AMD Glossary: Common Terms to Know
Part of clearly understanding AMD is decoding the jargon many use to describe this condition. Knowing what these words mean can also allow you to convey to others what's going on. Here are some terms that can help:
Age-related macular degeneration (AMD): This condition can cause blurring of the central vision in older adults. Vision loss occurs when the macula, which is responsible for detailed straight-ahead vision, is damaged.
Amsler grid: This AMD-detection tool resembles a piece of graph paper with a dot in the center. Closing one eye at a time, you will look for vision distortions. Fluid collecting beneath the retina in wet macular degeneration can cause straight lines to appear wavy. Missing areas can occur with dry AMD.
Anti-VEGF injections: In wet macular degeneration, a protein called vascular endothelial growth factor (VEGF) spurs the formation of abnormal, leaky blood vessels in the eye. Fortunately, ophthalmologists can inject anti-VEGF medicine into the eye where needed. The anti-VEGF blocks the VEGF protein, preventing the abnormal blood vessels from forming.
Choroid: This layer of the eye contains blood vessels. It lies under the retina and extends to the white of the eye (sclera). It provides oxygen and nourishment to the retina.
Choroidal neovascularization (CNV): Neovascularization means the development of new blood vessels. With choroidal neovascularization, there's too much VEGF, and new blood vessels appear on the choroid and then spread to the retina.
Drusen: These yellowish deposits of protein and lipids appear under the retina. While these do not cause AMD, having them puts you at increased risk for the condition, although it is unclear why.
Dry AMD: With this form of AMD, as you age, the macula gets thinner, and drusen begin to form. As this progresses, you begin to lose your central, detailed vision.
Fluorescein angiography (FA): This procedure involves using fluorescein dye. The dye is injected into the arm, circulates through your body, and reaches the blood vessels of the eye. A special camera takes images of the eye, identifying any abnormal retinal blood vessels and determining where treatment is needed.
Fundoscopy: With this test, also called ophthalmoscopy, an ophthalmologist can determine the health of your retina. With a light and a magnifying lens, the opthalmologist can examine the eye's retina and optic nerve and see if you have macular degeneration.
Geographic atrophy: In geographic atrophy (GA), which occurs in dry age-related macular degeneration, cells such as photoreceptors and blood vessels waste away in areas of the retina. With these cells missing in places, the retina can look like a map with different regions. The areas of the retina without these cells become blind spots. The condition can occur in one or both eyes.
Geographic atrophy treatments: Two drugs are available to treat GA, both approved in 2023. Syfovre (pegcetacoplan) and Izervay (avacincaptad pegol) work by targeting different proteins in the body's complement system, which is part of the immune system. Research suggests that if the complement system overreacts, death of retinal cells can occur, eventually causing central vision loss. By blocking this process, the drugs slow the progression of geographic atrophy and help preserve vision. Both are given as injections into the eye.
Laser photocoagulation surgery: An ophthalmologist can use this laser treatment to seal off abnormal blood vessels under the macula.
Low vision rehabilitation: Strategies are used to maximize the remaining vision to try to compensate for any lost sight. This can involve using special devices, as well as undergoing training to assist in maximizing vision.
Macula: The macula, located at the retina's center, gives sharp, detailed vision that enables you to read and recognize faces.
Optical coherence tomography (OCT): With this imaging test, light waves create a cross-sectional image of the retina. This enables an ophthalmologist to view and measure each retinal layer and help determine where treatment is needed.
Photodynamic therapy (PDT): Using PDT, an ophthalmologist injects a light-sensitive medicine into your arm. The drug circulates to your macula, where it collects. Then the ophthalmologist shines a special light to activate this photoreactive medication. The process creates clots that work to seal off the abnormal blood vessels that otherwise could cause more vision loss.
Retina: This is a layer of light-sensitive cells on the back wall of the eye. The cells here detect light and relay the information to the brain, enabling you to see.
Retinal pigment epithelium (RPE): This layer of pigmented cells is next to the retina. These cells are the go-between for the retina and the choroid, located below this and rich with blood vessels. Some think that this is where macular degeneration starts. It is up to the RPE to nourish the retina and get rid of dead cells. It is also responsible for regulating immune factors.
Retina specialist: A retina specialist is an ophthalmologist with a subspecialty in diseases of the retina and performing retinal surgery.
Scotoma: A scotoma (blind spot) involves a blank or diminished area of vision where you should be able to see.
Visual distortion: With wet AMD, fluid can get under the retina, causing it to bulge in places. Because of this, the light hits the retina differently and can cause straight lines to appear crooked and images to look twisted.
Wet AMD (neovascular): This is a type of AMD in which vascular endothelial growth factor (VEGF) spurs the development of abnormal blood vessels in an area of the eye where these should not be located.
Progression of AMD
AMD can progress and lead to central vision loss. The speed of progression varies by the form of AMD, and each person has a different degree and speed of progression. In general, dry AMD usually progresses slowly. Wet AMD can cause a rapid decline in vision, sometimes within days or weeks of first detecting the condition.
Talking About Your AMD With an Ophthalmologist
Your retinal specialist is a provider who you will see periodically for the foreseeable future. First, they will shepherd you through the process of getting a diagnosis. Then, they will be the ones to help you sift through the options for preserving your vision. It's essential to develop a good rapport from the outset.
To get the relationship off on the right foot, as well as make sure you cover all the crucial points, come equipped with some questions, such as the following:
What testing is essential here, and why?
Do tests show that I have wet or dry AMD, and at what stage is it in?
What can I do to slow down AMD and keep my vision?
How often do I need to be examined?
What are my treatment options, and how frequently will this need to be done?
What are the signs that my condition may be progressing, and how important is it to report this immediately?
Can one form of AMD—either wet AMD or dry AMD— morph into the other?
Are my family members, such as my children or siblings, also at risk for AMD?
Are there any lifestyle modifications I can make to help protect my vision?
What can I expect to happen to my vision if the condition progresses?
Why is seeing a specialist instead of my regular eye doctor important?
If my vision deteriorates, what are the options for helping me to maximize my remaining sight?
Throughout the process, it's important to keep the lines of communication open to give you a sense that your retina specialist is in touch with your concerns.
Speaking the Same Language: AMD Support Groups
Even with a variety of treatment options, learning that you have AMD can be overwhelming for anyone. Your family and friends can be a great source of support and help with daily responsibilities and running errands if needed.
In addition, reaching out to others who know for themselves what you are going through can make a big difference. You are far from alone. In the United States, around 20 million adults have some type of AMD.
Joining an AMD support group provides you with a chance to do the following:
Connect with others who know what you are going through and can offer real-world experience navigating the condition.
Hear personal anecdotes and tips for undergoing treatments and preserving vision.
Find out about strategies for maximizing vision and what this means for everyday life if lost.
It can also be an ideal opportunity to use the AMD-related words you've mastered in a setting where everybody knows what you are talking about.
Summary
While learning you have AMD can be challenging, talking to others can help to alleviate your concerns. But to make this easier, it's essential to clearly understand the terms your eye doctor will be using and that you will need to explain what's happening to others.
Also crucial is speaking to others with AMD, which can help you feel less alone. It also is an excellent way to learn how to navigate this condition successfully.
Read the original article on Verywell Health.
