Ask the Health Leader: Our Best Advice
We asked our Health Leaders what they wish someone had told them when they were first diagnosed. After looking back on their journeys, they offered their best advice.
Andrea
My advice to others who have recently been diagnosed with macular degeneration is simple. Educate yourself on as much as you can. Focus on the main areas of the disease: treatments, diet, exercise, mental health, vitamins . . . and give yourself some grace. This is not easy, but you're strong and you will find your way.
Linda
Knowledge is power, so connecting with a knowledgeable, accredited source like the MacularDegeneration.net community is also very critical. Find a place to nurture and guide you through your journey. This website has been my saving grace.
Debbie
Reach out to everyone around you for help. Do not hesitate to ask for help, sharing this story of macular degeneration may just help someone else in the future.
Wendy
My advice would be, first: Don't panic. This disease often moves very slowly. Then, find out exactly what your diagnosis is (wet or dry), what stage, and whether it's one or both eyes. Ask about the suitability of AREDS2 supplements for you and how to use an Amsler Grid. If you have wet macular degeneration, make sure you know which medication is in your injection and what the ongoing treatment plan is.
Cora
I would advise anyone newly diagnosed to learn all they can about macular degeneration. Knowledge is power. Make any necessary accommodations, then don’t dwell on it. Enjoy the here and now.
Richard
Don’t panic! Even though I know you will . . . it’s all part of the process. Just know that this disease is a “slow mover,” and it may take years or even decades before your central vision is impacted. Learn all you can about AMD [age-related macular degeneration], diet, exercise, BMI (body mass index), and such.
Visit and communicate with your vision specialist on a regular basis. Take reminder cards with you when you visit your eye doc so you don’t forget to ask things you otherwise might.
Be an active member of our group MacularDegeneration.net or a like group. You can participate by reading, asking questions, offering advice, or just venting if that helps. Knowledge is power, and we are stronger as a group than we are alone.
Sharon
Find a retinal specialist you have confidence in to provide your care. Follow the treatment plan and recommendations of your retinal specialist. Above all, hang on to hope.
The power of sharing experiences
Though a new diagnosis can be intimidating, living well with macular degeneration is possible. Our Health Leaders shared their experiences to make the journey a little easier for those facing a macular degeneration diagnosis for the first time.
If you have questions for others with macular degeneration, head over to our forums to connect. If you have some invaluable advice of your own to share with the community, leave it in the comments below!
Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).
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