Blind and Visually Impaired Community
↑
3
↓
New Dry Macular Degeneration Diagnosis... What to expect? (self.Blind)
submitted by TacomaWA
I have recently been diagnosed with dry macular degeneration in both eyes. This came as a real surprise because I am supposedly too young to have this. My doctor says what I have is rare and likely genetic. I have already noticed significant issues with my left eye. Text is distorted and lines that should be straight are not in that eye. My right eye seems to be compensating... for now. I also struggle in low light. All of these are common symptoms of this, I know.
My question is what should I expect? What is the prognosis? How will this progress? When my doctor told me, I was caught off guard and didn't think to ask all this. She did tell me there was nothing to be done except take vitamins. I am trying to get a new appointment now, but I thought I would go ahead and ask here too.
Thanks for any help you all might have...
My question is what should I expect? What is the prognosis? How will this progress? When my doctor told me, I was caught off guard and didn't think to ask all this. She did tell me there was nothing to be done except take vitamins. I am trying to get a new appointment now, but I thought I would go ahead and ask here too.
Thanks for any help you all might have...
KillerLag 2 points 4y ago
Just to check, how old are you? Mac Degen used to be called Age Related Macular Degeneration, until they have a better understanding of it. If you are significantly younger, it may actually be Stargardt's disease (https://nei.nih.gov/health/stargardt/star_facts), which actually used to be called Juvenile Macular Degeneration.
You should definitely talk to your doctor, because the prognosis of that disease is quite varied. I've known people that have had stable mac degen for 20 to 30 years, and others when it got worse over a shorter time period.
There is some research that indicate mac degen is caused by UV radiation, and many places suggest wearing sunglasses to cut out UV radiation (and amber sunglasses, as well). However, I believe some more recent studies seem to indicate UV radiation plays a less significant part that previously thought. (https://www.macular.org/ultra-violet-and-blue-light )
Another thing you can do is print off an Amsler Grid (https://www.allaboutvision.com/conditions/amsler-grid.htm) and stick it on the fridge. You can check on the grid every day to see if things are stable (some people mark the grid with what areas the lines are distorted/wavy and where there are spots), and if there is a new area that is distorted or the area is getting bigger, that helps to indicate you should talk to your doctor.
You should definitely talk to your doctor, because the prognosis of that disease is quite varied. I've known people that have had stable mac degen for 20 to 30 years, and others when it got worse over a shorter time period.
There is some research that indicate mac degen is caused by UV radiation, and many places suggest wearing sunglasses to cut out UV radiation (and amber sunglasses, as well). However, I believe some more recent studies seem to indicate UV radiation plays a less significant part that previously thought. (https://www.macular.org/ultra-violet-and-blue-light )
Another thing you can do is print off an Amsler Grid (https://www.allaboutvision.com/conditions/amsler-grid.htm) and stick it on the fridge. You can check on the grid every day to see if things are stable (some people mark the grid with what areas the lines are distorted/wavy and where there are spots), and if there is a new area that is distorted or the area is getting bigger, that helps to indicate you should talk to your doctor.
[deleted] 1 points 4y ago
[removed]
-shacklebolt- 1 points 4y ago
Please refrain from asking for or providing medical advice in replies to this post.
We are not doctors and cannot tell you what your personal prognosis for your condition might be, that's definitely something that needs to be discussed with your doctor.
We are not doctors and cannot tell you what your personal prognosis for your condition might be, that's definitely something that needs to be discussed with your doctor.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.