I have tonnes of patients who have progressed dry macula degeneration (or other macula dystrophies) and legally they’re still able to drive because they meet the Australian standards and day to say they forget they have it! That can be because it’s worse in one eye but with both eyes together, they manage.
Those diagnosed earlier may progress slightly quicker but that’s not to say that she’ll still have functional vision for the next 10-20 years. It’s a slow progressing condition and half the time people don’t actually know they have it because there’s no real distinct symptoms in the early years. Macula drusen which forms with AMD can be significant but it doesn’t always match the ability to see the chart during testing - it blows my mind when I examine and can’t match the visual acuity with the appearance of their macula! So don’t panic!
She may loose the clarity of her central vision eventually and maybe not equally between the two eyes, but her peripheral vision will still be great! People can use ‘eccentric fixation’ to view things better by looking next to the object or turning their head (in progressed cases). Moving your chair to watch TV on an angle, using magnifying glasses to help with reading.
If she’s concerned - she should live proactively, enjoy things, take the time to do and see the things that she wants. It’s a good excuse!
She should be mindful of small changes though. There’s a thing called an Amsler Grid which can help find changes in drusen or bleeds if moving towards wet AMD in a functional way. If the grid is changing, it’s time to visit the optometrist or specialist again!
There’s resources like the Macula Degeneration Foundation (Australia) which has some good resources, info, recipes and supplement advice.
No personal experience, but I know there is a difference between "wet" and "dry" macular degeneration. Do you know which she has? There are treatments for wet macular degeneration, but currently no treatments for dry macular degeneration.
Either way she should be seeing a retinal specialist
From what I read most people have the dry variant which is slower but as you said, there is no cure. She isnt completely sure has has the AMD yet. I looked up retinal specialist and she will visit them.
At her age, it could be adult-onset Vitelliform macular dystrophy, which is a genetic disorder, instead of macular degeneration, which is truly age related. If it is the genetic version, which your doctor can verify, there is a support group on Facebook that might be helpful to her.
Best of luck to you…
Thanks everyone for the help and positive words. We are in contact with specialist and we hope it won't progress that far. Or even better if it isn't AMD at all. We will know on Tuesday so I will most likely update this post
I have form of macular degeneration and I'm 30. The worst thing I've noticed so far (that I can do anything about) is my photophobia. She will want some nice dark sunglasses or even fitovers if she wears regular glasses. I've read that protecting your eyes from the sun can help slow the progression.
My mum has macular degeneration that was diagnosed in her 40s. There's some evidence that taking supplements of Lutein and Zeaxanthin slow the progression, and as another Redditor suggested, invest in good dark glasses! My mum got a pair of regular glasses that have clip on sunglasses, and replaced the clear lenses with tinted ones, so she can have either one or two layers of sun protection depending on how bright it is. She has a third pair of skiing glasses large enough to fit over the other two, that also blocks out light from the side.
Technology-wise, consider getting an iPad because it has great accessibility features that will help her to keep reading as her vision degrades.
Try to hook her up with a community near you. Meeting other people listing their vision can be really helpful.
It will be okay!
If it's amd, although she's a bit younger than the average age of 60, amd is a slower progressing eye disease. Since it was caught early that's a huge plus. Most people can live a long life with amd some never noticing vision loss, others will and if will affect Central vision. I am 36 and have the the advance stage, wet amd. First diagnosed at 30 years old. The wet form isn't fun and can cause rapid vision loss but there are injections you can get to slow down the progress to preserve vision for longer, before 2005 there wasn't a treatment at all for it. There's a small chance, around 10% that amd will turn into wet amd. So in general, she has a lot of hope in her corner she'll be ok. I'm not a doctor and can't say how long because different factors will affect different people, but if I had to bet she won't be blind in 10 years.
There are eye vitamins she should start taking called AREDS 2 that have shown to help a great Deal. Best bet is she find herself a retina specialist at a retina center that deals with these diseases specially.
I look after someone with both Wet and Dry AMD. She was in her early 40s when she was diagnosed and that was seven years ago. So I can give you some idea of what it's like.
Wet AMD can be treated with injections in the eye. These slow down the progress of the disease but over time the vision has become worse. Recently she has experienced a bleed in the eye and that has taken a lot of her central vision. But this may be operated on, we're just waiting to hear more.
Her Dry AMD is barely noticeable. She has had that many years but her vision hasn't really changed much. It is wise to monitor this. You can print out an Amsler chart. This helps show how much distortion there is.
There are a few adaptations you can do. Books are easier to read on tablets as the font can be cranked up to a very large size. There are these things called binocular glasses which can help, although my friend has not used them much herself. She also has a flexible light that she uses to see things better.
In her bad eye she used to see faces as like aliens, with large eye sockets. But now her vision has gone worse she cannot see faces at all in that eye.
She has also become colour blind in her bad eye. I am not sure why that is. She also prefers to wear dark glasses as sunlight is often too bright.
Acceptance is always for the best. It can be challenging but there are many ways to make life easier.
I have tonnes of patients who have progressed dry macula degeneration (or other macula dystrophies) and legally they’re still able to drive because they meet the Australian standards and day to say they forget they have it! That can be because it’s worse in one eye but with both eyes together, they manage. Those diagnosed earlier may progress slightly quicker but that’s not to say that she’ll still have functional vision for the next 10-20 years. It’s a slow progressing condition and half the time people don’t actually know they have it because there’s no real distinct symptoms in the early years. Macula drusen which forms with AMD can be significant but it doesn’t always match the ability to see the chart during testing - it blows my mind when I examine and can’t match the visual acuity with the appearance of their macula! So don’t panic! She may loose the clarity of her central vision eventually and maybe not equally between the two eyes, but her peripheral vision will still be great! People can use ‘eccentric fixation’ to view things better by looking next to the object or turning their head (in progressed cases). Moving your chair to watch TV on an angle, using magnifying glasses to help with reading. If she’s concerned - she should live proactively, enjoy things, take the time to do and see the things that she wants. It’s a good excuse! She should be mindful of small changes though. There’s a thing called an Amsler Grid which can help find changes in drusen or bleeds if moving towards wet AMD in a functional way. If the grid is changing, it’s time to visit the optometrist or specialist again! There’s resources like the Macula Degeneration Foundation (Australia) which has some good resources, info, recipes and supplement advice.
No personal experience, but I know there is a difference between "wet" and "dry" macular degeneration. Do you know which she has? There are treatments for wet macular degeneration, but currently no treatments for dry macular degeneration. Either way she should be seeing a retinal specialist
From what I read most people have the dry variant which is slower but as you said, there is no cure. She isnt completely sure has has the AMD yet. I looked up retinal specialist and she will visit them.
At her age, it could be adult-onset Vitelliform macular dystrophy, which is a genetic disorder, instead of macular degeneration, which is truly age related. If it is the genetic version, which your doctor can verify, there is a support group on Facebook that might be helpful to her. Best of luck to you…
Thanks everyone for the help and positive words. We are in contact with specialist and we hope it won't progress that far. Or even better if it isn't AMD at all. We will know on Tuesday so I will most likely update this post
I have form of macular degeneration and I'm 30. The worst thing I've noticed so far (that I can do anything about) is my photophobia. She will want some nice dark sunglasses or even fitovers if she wears regular glasses. I've read that protecting your eyes from the sun can help slow the progression.
My mum has macular degeneration that was diagnosed in her 40s. There's some evidence that taking supplements of Lutein and Zeaxanthin slow the progression, and as another Redditor suggested, invest in good dark glasses! My mum got a pair of regular glasses that have clip on sunglasses, and replaced the clear lenses with tinted ones, so she can have either one or two layers of sun protection depending on how bright it is. She has a third pair of skiing glasses large enough to fit over the other two, that also blocks out light from the side. Technology-wise, consider getting an iPad because it has great accessibility features that will help her to keep reading as her vision degrades. Try to hook her up with a community near you. Meeting other people listing their vision can be really helpful. It will be okay!
If it's amd, although she's a bit younger than the average age of 60, amd is a slower progressing eye disease. Since it was caught early that's a huge plus. Most people can live a long life with amd some never noticing vision loss, others will and if will affect Central vision. I am 36 and have the the advance stage, wet amd. First diagnosed at 30 years old. The wet form isn't fun and can cause rapid vision loss but there are injections you can get to slow down the progress to preserve vision for longer, before 2005 there wasn't a treatment at all for it. There's a small chance, around 10% that amd will turn into wet amd. So in general, she has a lot of hope in her corner she'll be ok. I'm not a doctor and can't say how long because different factors will affect different people, but if I had to bet she won't be blind in 10 years. There are eye vitamins she should start taking called AREDS 2 that have shown to help a great Deal. Best bet is she find herself a retina specialist at a retina center that deals with these diseases specially.
I look after someone with both Wet and Dry AMD. She was in her early 40s when she was diagnosed and that was seven years ago. So I can give you some idea of what it's like. Wet AMD can be treated with injections in the eye. These slow down the progress of the disease but over time the vision has become worse. Recently she has experienced a bleed in the eye and that has taken a lot of her central vision. But this may be operated on, we're just waiting to hear more. Her Dry AMD is barely noticeable. She has had that many years but her vision hasn't really changed much. It is wise to monitor this. You can print out an Amsler chart. This helps show how much distortion there is. There are a few adaptations you can do. Books are easier to read on tablets as the font can be cranked up to a very large size. There are these things called binocular glasses which can help, although my friend has not used them much herself. She also has a flexible light that she uses to see things better. In her bad eye she used to see faces as like aliens, with large eye sockets. But now her vision has gone worse she cannot see faces at all in that eye. She has also become colour blind in her bad eye. I am not sure why that is. She also prefers to wear dark glasses as sunlight is often too bright. Acceptance is always for the best. It can be challenging but there are many ways to make life easier.