If you’ve just been diagnosed with macular degeneration (sometimes called AMD), your world may feel a little unsteady. You might have a lot of questions—and at the same time, you may feel overwhelmed searching for all the answers.
That’s why Hadley offers this guide.
Am I going to go blind?
A diagnosis of macular degeneration usually doesn’t mean total blindness. It affects central vision, leaving your side vision usable. Changes often are gradual, giving many people time to adjust and try new ways of doing things.
If you’d like to learn more about how macular degeneration affects sight, these resources may be helpful:
- Cleveland Clinic, Macular Degeneration: a clear, straightforward explanation.
- American Academy of Ophthalmology (AAO), Understanding Macular Degeneration: easy-to-understand information about risk, vision loss, and monitoring.
How fast will my vision change?
Everyone’s experience of macular degeneration is different. Some people notice very little change for years, while others may see changes sooner.
Wills Eye Physicians/Mid-Atlantic Retina, leaders in macular degeneration care, answer this question further on their page How Long Does It Take to Lose Vision with Macular Degeneration.
Regular eye care is key. If you’re looking for eye-care providers, these organizations may be useful starting points:
- American Macular Degeneration Foundation: tips for finding a specialist.
- American Association of Ophthalmologists: ophthalmologist locator.
- American Society of Retina Specialists: retina specialist finder.
What can I do to stop it or slow it down?
While there’s no cure for macular degeneration, there are ways that may help slow progression and protect your vision. Effective treatments are available for wet macular degeneration. Everyday choices—like not smoking, following your doctor’s guidance, eating well, and keeping an eye on changes—can make a real difference.
Some of these choices are discussed by Mayo Clinic retinologist Dr. Sophia Bakri, in Hadley’s podcast episode Everyday Choices That Can Influence the Course of Eye Disease.
You might also want to learn about Notal Vision’s FDA-approved home-based monitoring tool. It’s designed to alert your eye-care provider to potential changes between visits. Hadley explores this option in the Hadley Presents episode Monitoring Macular Degeneration from Home: Notal Vision.
How will this affect my everyday life?
Macular degeneration can change how you do things, and sometimes this change may feel hard, even frustrating. Hadley’s free Living with Macular Degeneration workshop series shares practical tips that many members find helpful.
Connecting with others experiencing the same thing has helped many Hadley members, too. Hadley offers different ways to connect, including free low vision virtual support groups and a Peer-to-Peer program. Two additional places to find connection are:
- Living with Macular Degeneration Facebook group: a public group where people share questions and experiences.
- MacularDegeneration.net: a site focused on empowering people living with macular degeneration.
What trusted resources should I be using?
When you’re newly diagnosed, it can help to rely on sources that are steady, research-based, and realistic. These organizations offer reliable information along with updates on treatments and research:
- National Eye Institute (NEI), At a glance: AMD: clear, science-backed overview of macular degeneration, treatments, and current research.
- Foundation Fighting Blindness, Age-Related Macular Degeneration: helpful resources and research updates.
What resources have you found especially helpful for living with macular degeneration? We’d love to hear from you.
2 Comments
I started out with macular degeneration dry, which quickly led to wet which entail getting injections every four weeks after one of the injections I woke up and was having trouble seeing out of that eye long story short it started a hemorrhage which blocked my central vision so that I was pretty much just some peripheral vision after many years my left eye was just holding its own not really doing anything except that I was losing vision still, it turns out that the dry macular degeneration, which is now called geographic atrophy is eating up my vision. I now have GA around all of the eye except for right in the center but it’s encroaching rapidly and I know it’s only a matter of time before it affects my central vision and I’m left with both eyes with just peripheral so I don’t know how I’ll get along with just that now I’m scared I can get along with what I have now but once the central is gone, I just don’t know so that’s why I’m looking for help mentally and emotionally and whatever trips and tips and tricks might help. I’m grateful for this community here. I hope it will help me.
Thank you, Marion, for sharing your story. What you’re facing is a lot, and it makes sense that you’d be looking for support.
If you'd like, you might check out our Adjusting and Coping workshop series. It includes real people sharing their experiences with vision loss, along with strategies for getting through the emotional ups and downs.
https://hadleyhelps.org/workshops/adjusting-and-coping-together
If you do listen, we'd love to hear what you think. You can also call us at 800-323-4238.