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Macular Dystrophy: (self.Blind)
submitted by TacomaWA
So, it has been a bit of an adventure getting to this diagnosis. Some of my past posts here detail that, if you are interested. However, yesterday, I finally saw a specialist and after a number of tests, macular dystrophy is where it landed. This disease looks like macular degeneration in that you lose sight in your central vision, but the cause for macular dystrophy is genetic. There is no cure or treatment. Even the vitamins (AREDS) are ineffective and he recommended I stop taking them as my first doctor had orignially recommended. It is a rare condition so there is not a lot out there on it.
I mainly am writing now to check on whether others have had this and what their experiences were. I have the progressive form and \*best case\*, the doctor expects my vision to eventually be where my worse eye is right now. That's 20/60 with all corrections possible. However, both eyes are continuing to show progressive degeneration. My good eye actually is degenerating faster right now and he thinks it will eventually catch up with my other eye. So, I am guessing I will land somewhere worse than 20/60 when all is said and done but where, no one knows. He doesn't think I will lose all sight in my central vision though that is a possible outcome, but that is a guess too.
I also don't know how long I have before my good eye degenerates to the point that my life is significantly affected. I didn't really notice my one eye getting bad... until a year or so ago. I think my good eye just compensated and I never noticed. So, I don't know how long it took... I am guessing three, maybe four years?
I know to drive in my state, I need 20/40 with both eyes and no one eye worse than 20/70 to drive without restrictions. Reading is not possible with my 20/60 eye right now unless I significantly enlarge the fonts.
This is going to be a big change in my life so I am trying to prepare. Advice is welcome.
All my very best...
I mainly am writing now to check on whether others have had this and what their experiences were. I have the progressive form and \*best case\*, the doctor expects my vision to eventually be where my worse eye is right now. That's 20/60 with all corrections possible. However, both eyes are continuing to show progressive degeneration. My good eye actually is degenerating faster right now and he thinks it will eventually catch up with my other eye. So, I am guessing I will land somewhere worse than 20/60 when all is said and done but where, no one knows. He doesn't think I will lose all sight in my central vision though that is a possible outcome, but that is a guess too.
I also don't know how long I have before my good eye degenerates to the point that my life is significantly affected. I didn't really notice my one eye getting bad... until a year or so ago. I think my good eye just compensated and I never noticed. So, I don't know how long it took... I am guessing three, maybe four years?
I know to drive in my state, I need 20/40 with both eyes and no one eye worse than 20/70 to drive without restrictions. Reading is not possible with my 20/60 eye right now unless I significantly enlarge the fonts.
This is going to be a big change in my life so I am trying to prepare. Advice is welcome.
All my very best...
[deleted] 2 points 7m ago
[removed]
OldMaidRunner 2 points 1y ago
Hi! I came across your post when looking for information about macular pattern dystrophy, which I was diagnosed with a couple of weeks ago. I’m thinking it’s fairly rare because it’s hard to find any information on it that is even recent research. I was told there really isn’t much you can do about it except to not smoke, be in a smoky environment and to always wear sunglasses when outside, and that she’ll ( retinal specialist) see me in 6 months. Is this typical? Any information on what to expect would be greatly appreciated. TIA
TacomaWA [OP] 1 points 1y ago
So, you are right, this disease is very rare. In most cases, macular dystrophy is genetic. There are some tests you can take to confirm the type you have (there are several versions of this disease, mostly defined by your age.) However, there is no treatment and how it progresses (if it progresses) varies person to person. The reason for the six month followup appointment is to track the progression so they can give you a long-term prognosis.
The two most common forms are Best Disease and Adult Onset Vitelliform Macular Dystrophy. Younger people, in their teens and 20s, typically get Best Disease. People in their late 30s to 40s typically first present with Adult Onset Vitelliform. Both are typically defined by declines in central vision. The difference between these diseases and Age Related Macular Degeneration, which presents similarly, is the fact it starts younger, is genetic and there is no treatment.
I have not heard that smoking or outside light affects this disease. I don't smoke so maybe that was why that was mentioned to you? Anything to help protect your eyes from UV is a good thing. Both of those are commonly mentioned for Age Related Macular Degeneration which typically shows up in your later 50s, so maybe the doctor just wanted to give you something. But generally, there is no current treatment for this disease.
There are Facebook groups for both Best Disease and Adult Onset Vitelliform.
I know this is scary. But, there are ways to live with this. No, it isn't ideal and it does affect your life, but you can continue to live well.
Best to you...
The two most common forms are Best Disease and Adult Onset Vitelliform Macular Dystrophy. Younger people, in their teens and 20s, typically get Best Disease. People in their late 30s to 40s typically first present with Adult Onset Vitelliform. Both are typically defined by declines in central vision. The difference between these diseases and Age Related Macular Degeneration, which presents similarly, is the fact it starts younger, is genetic and there is no treatment.
I have not heard that smoking or outside light affects this disease. I don't smoke so maybe that was why that was mentioned to you? Anything to help protect your eyes from UV is a good thing. Both of those are commonly mentioned for Age Related Macular Degeneration which typically shows up in your later 50s, so maybe the doctor just wanted to give you something. But generally, there is no current treatment for this disease.
There are Facebook groups for both Best Disease and Adult Onset Vitelliform.
I know this is scary. But, there are ways to live with this. No, it isn't ideal and it does affect your life, but you can continue to live well.
Best to you...
OldMaidRunner 2 points 1y ago
Thank you for your kind reply.
No I don’t smoke. I was actually at an appointment for my dry eyes when the ophthalmologist said he saw something in the back of my eyes and then said I needed to see a retinal specialist. I honestly thought I had AMD before my appointment because my grandmother had it and so was thrown for a loop when told I had pattern dystrophy. I’m in my early 50’s and she said that was too young for AMD. So now I wonder if my grandmother had AMD after all.
Anyway, thank you so much. This has been so stressful and it is nice to chat with someone who understands.
No I don’t smoke. I was actually at an appointment for my dry eyes when the ophthalmologist said he saw something in the back of my eyes and then said I needed to see a retinal specialist. I honestly thought I had AMD before my appointment because my grandmother had it and so was thrown for a loop when told I had pattern dystrophy. I’m in my early 50’s and she said that was too young for AMD. So now I wonder if my grandmother had AMD after all.
Anyway, thank you so much. This has been so stressful and it is nice to chat with someone who understands.
TacomaWA [OP] 1 points 1y ago
Absolutely. Happy to help. It can be very scary... but you are not alone.
Given that it is genetic, it is quite possible your grandmother may indeed have had this disease.
I encourage you to look into the Adult Onset Vitelliform Macular Dystrophy Facebook group. Given your age, that is most likely what your pattern dystrophy is... though that needs to be confirmed by your doctor. There are over 100 people there potentially like you who discuss their experiences with this disease.
Best of luck!
Given that it is genetic, it is quite possible your grandmother may indeed have had this disease.
I encourage you to look into the Adult Onset Vitelliform Macular Dystrophy Facebook group. Given your age, that is most likely what your pattern dystrophy is... though that needs to be confirmed by your doctor. There are over 100 people there potentially like you who discuss their experiences with this disease.
Best of luck!
OldMaidRunner 1 points 1y ago
I will. Thank you so much!
Otherwise_Computer79 2 points 1y ago
What were ur first symptoms
TacomaWA [OP] 1 points 1y ago
Distortion in my central vision was my first symptom. There is a test you can take with the Amsler Grid that can show if you have distortion.
$1
If you do, your eye doctor can do tests on your eyes to check the macula.
There is a Facebook group for Adult-Onset Vitelliform Macular Dystrophy that might be helpful too.
Best to you...
$1
If you do, your eye doctor can do tests on your eyes to check the macula.
There is a Facebook group for Adult-Onset Vitelliform Macular Dystrophy that might be helpful too.
Best to you...
Otherwise_Computer79 1 points 1y ago
How is ur vision now
TacomaWA [OP] 1 points 1y ago
It has steadily declined over time. At this point, I am on the edge of losing the right to drive. Where it will ultimately land is still unknown.
The good news for me is that the decline has been very slow. But, it still has been progressive... but everyone progresses differently. Some don't progress at all.
I go to the eye doctor every six months to mark the progress. For those with this disease, that is common.
Best to you...
The good news for me is that the decline has been very slow. But, it still has been progressive... but everyone progresses differently. Some don't progress at all.
I go to the eye doctor every six months to mark the progress. For those with this disease, that is common.
Best to you...
Autumnwood 1 points 4y ago
Hi nice to meet you! I have macular degeneration and have lost some central vision in my left eye. I'm having problems reading close up and have increased fonts in everything. I use dark mode in everything I can (dark grey with light grey text is easiest on my eyes) and wear blue light filter lens to protect my vision as much as possible. I do take Preservision per doctor's orders to help preserve my vision and also am on a treat-and-extend injection therapy in the left eye. I hope this is as bad as it gets, but life has no guarantees. The last time I was in my doctor said it looks like maybe it was trying to start again just slightly. So who knows. I've also tried to make sure I take dark greens daily. So I have a nutribullet and make smoothies and jam it full of kale (along with berries and such).
Well I'm new at this so I'm not fill of resources. But there are some things I've looked into. Here are some things you can try.
Be My Eyes - I'm actually a volunteer here. If you are having problems seeing anything, there are millions of volunteers who are more than happy to help you see receipts, read small lettering, help with so many tasks.
NLS - National Library Service for the Blind - you can get free equipment and have books read to you through their system (there is a current ad on TV for this) $1
Rides - not sure where you live but here in LA county, if you are disabled in any way you can apply for ACCESS and drivers will come and get you and take you where you need to go. Doctors appointments, grocery shopping, religious events, picnics...doesn't matter. Very cheap fares (less than a dollar). Check with your city or county or the government to see what is offered.
I'm also trying to learn the accessibility features of my phone, and did things like made my TV fonts larger and easier on my eyes. If we learn what is available to make our lives easier now, later we will know what to ask for when we need help.
The best to you...
Well I'm new at this so I'm not fill of resources. But there are some things I've looked into. Here are some things you can try.
Be My Eyes - I'm actually a volunteer here. If you are having problems seeing anything, there are millions of volunteers who are more than happy to help you see receipts, read small lettering, help with so many tasks.
NLS - National Library Service for the Blind - you can get free equipment and have books read to you through their system (there is a current ad on TV for this) $1
Rides - not sure where you live but here in LA county, if you are disabled in any way you can apply for ACCESS and drivers will come and get you and take you where you need to go. Doctors appointments, grocery shopping, religious events, picnics...doesn't matter. Very cheap fares (less than a dollar). Check with your city or county or the government to see what is offered.
I'm also trying to learn the accessibility features of my phone, and did things like made my TV fonts larger and easier on my eyes. If we learn what is available to make our lives easier now, later we will know what to ask for when we need help.
The best to you...
TacomaWA [OP] 1 points 4y ago
Thank you for taking the time to write this out. Macular dystrophy has a very similar path to macular degeneration, so hearing your experiences is helpful.
The resources you list are also incredibly helpful. Thank you.
If there is one particularly nagging fear it would be what am I going to do about work. I have a long way to go before retirement and my job is all about reading, computers and well... things like that. So, I am going to have to find a path with that.
Thank you again for taking the time. Best to you too!
The resources you list are also incredibly helpful. Thank you.
If there is one particularly nagging fear it would be what am I going to do about work. I have a long way to go before retirement and my job is all about reading, computers and well... things like that. So, I am going to have to find a path with that.
Thank you again for taking the time. Best to you too!
Autumnwood 1 points 4y ago
My career too, is computers. I can still use mine but have issues with long periods of use (and short too!) There are visual assistance apps to help. I would look into those. Years ago I volunteered for Columbia Lighthouse for the Blind. Strangely (or not so, I'm sure it was fated) I was paired with someone who had very bad macular degeneration. There were no injections to stop the progress at the time. She still used computers and was getting her graduate degree. Her vision was so bad she moved to within inches of the screen so she could see. There was software to increase readability. So I'd look into all that and organize the information for access later. And why not install some of these things now to see what you like and what works for you. You are your own best investment, for sure! I'm also looking into TTS and having things ready to me more often. When my eyes get tired I share to Article Reader and have the piece read to me (I think Instapaper and maybe Pocket do that too, but I use these.for things I want to keep). Once you start looking you'll be amazed at all the tools out there. I know I am. But there's still a long way to go. Dark mode, night mode and sepia should be in every single software, as well as huge font sizes and different font styles.
Oh p.s. back to the work thing. I'm looking at work at home stuff. There are teaching jobs online, Appen (planning to apply) and other things you could do (check /r/WorkOnline ) but if you could extend your current work with benefits and use accessibility tools do that as long as you can and hopefully your company will assist you as well.
BTW check out JoeyforReddit. You can make your font large. Pick a zillion themes (Unlike Discord theme and downloaded the Martel font and use it everywhere) and when you aren't able to read anymore but still want to enjoy Reddit you can have all the posts read to you.
Oh p.s. back to the work thing. I'm looking at work at home stuff. There are teaching jobs online, Appen (planning to apply) and other things you could do (check /r/WorkOnline ) but if you could extend your current work with benefits and use accessibility tools do that as long as you can and hopefully your company will assist you as well.
BTW check out JoeyforReddit. You can make your font large. Pick a zillion themes (Unlike Discord theme and downloaded the Martel font and use it everywhere) and when you aren't able to read anymore but still want to enjoy Reddit you can have all the posts read to you.
TacomaWA [OP] 2 points 4y ago
This is terrifically helpful. I also found it ironic that I too worked as a member of my institution's accessibility group, specifically with helping bring our online resources up to meeting WCAG 2.0 AA standards. We are already talking about going for 2.1. I did all this well before I became aware that I might need it myself someday. Funny how life works...
Again, thank you for your help. All these resources have been terrific. I am lucky that my work will be supportive. They already have by buying bigger monitors for me.
You know, this hit me as I am middle age with decades to go before retirement. It is good to know there are paths to making this work... though my life is definitely going to be very different than I expected.
Best to you...
Again, thank you for your help. All these resources have been terrific. I am lucky that my work will be supportive. They already have by buying bigger monitors for me.
You know, this hit me as I am middle age with decades to go before retirement. It is good to know there are paths to making this work... though my life is definitely going to be very different than I expected.
Best to you...
omiizu 1 points 3y ago
How are you doing now? I'm curious as my husband just came back from a retina specialist and they say he has it. He is 30 and we went in for floaters in both eyes...we are going through a crisis. As his vision is perfect now but we just don't know what is going to happen and were given no information... there is not much about this in my searches.
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