Who has macular degeneration that has stabilized?
Is it possible to have the intermediate stage of dry macular degeneration and it NOT get any worse? Mine has been stable for awhile but my Retina Specialist says it often progresses more quickly in your mid-70’s. I’m age 75. Has anyone stayed stable and it never progressed to the advanced stage? Can that even happen? A good question for my RS at my 6-month appointment! What has been your experience? Linda Hoopes, Advocate & Team Member
That’s an interesting point, Wendy. The hereditary factor can be pretty strong. I don’t think my mom was driving in her mid-seventies and I’m still fortunate to be driving. Then again, she was a chain smoker, over weight, didn’t eat healthy and didn’t take eye vitamins (not sure they even recommended them then). A lot of variables to consider.
I was diagnosed o7 years ago with early dry macular degeneration. Mine progressed to intermediate in one eye within 2 years. My vision is worsening though my OCT scan doesn’t indicate much change. My retinal specialist says it is always progressing to some degree. I see my retinal specialist next week and am concerned about the changes in my vision. It doesn’t help that I have chronic dry eye that compounds the problem. Sharon Moore Patient leader - It’s funny how we all have such different experiences. Your dry AMD progressed much faster than mine. I interviewed a neighbor who had a similar situation as you with dry and it progressed more rapidly. Not sure what causes that variance. I also found it interesting that there wasn’t much change in your scan but your vision has worsened. I notice that, too. When my RS says I’m stable, I can still notice that I just don’t see as well. Thanks for the feedback. We’re all learning together! Linda Hoopes, Team Member
I was just told this week that I have macular degeneration….but did not really say much else….like told me to take vitamins and come back if I need too….needless to say I am confused….I am 73 ….almost 74 and he said my vision was 20…25……now all the reading I have been doing online….there just doesn’t seem to be much discussion about it …according to numbers only 1 in 100 turns into the advanced …according to the cdc like 22 million people have this and only 1.3 million have major problems….i don’t know if I need another opinion….geez I am just so nervous and depressed….I have anxiety anyway…so this has set me over the edge….thanks for listening!
- A friend of mine recently called who was in a very similar situation as you described about being diagnosed with little explanation or empathy. I’m so glad you found this website. It is both supportive and informative. It has helped me greatly. I’m curious whether or not you’re going to a Retina Specialist. Many of us have regular check-up with a RS following diagnosis. It certainly helps relieve anxiety about exactly what’s going on but there are good ones and bad ones, like any other profession. I am fortunate to have found one who sees me every 6 months & kindly answers all my questions. I was diagnosed with dry AMD 11 years ago & it has progressed very slowly from the beginning stage to intermediate. I also checked in with a counselor about 5 years ago to help me with my anxiety about my vision getting worse and “becoming like my mother.” It was well worth the time & co-pay. You have so many options available to you, including this valuable community. So glad you found us! Linda Hoopes, Advocate & Team Member My mother is 83 and still able to drive during the day. She progressed from dry to wet several years ago but has been fairly stable with avastin (sp??) injections. It is definitely not an end to joy and happiness. She has found a flashlight helps, also amber sunglasses. Colors are an interesting conversation usually as well. I carry both genes for AMD myself. My mom’s sister and my grandfather have/had it as well. I am already being monitored by a retina specialist and taking 2 of the supplements recommended. Here’s to prayers for a cure!!
It sounds like you also have a lot of family history with AMD. I have 4 siblings & none of us have ever been tested for AMD genes nor has my RS ever mentioned it to me. I would love to hear more about how you were tested & what supplementation was recommended. Were the vitamins you take based on your genetic testing & does your RS sell the supplements? There is so much for all of us to learn about different strategies. Thanks for your feedback, Amyem. Linda Hoopes, Team Member
The basic genetic testing was done as part of my 23 and Me genealogy stuff. The supplements were recommended by my eye doctor and are available anywhere vitamins are sold. It is lutein and zeaxanthin. Always ask your doctor about any supplements. We are also protecting our eyes with blue blocker and other protective coatings on our lenses. I hope all of this helps someone.
