Blind and Visually Impaired Community
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Greetings (self.Blind)
submitted by over_the_light
Hi, all. I'm new to reddit and this group. I'm 28 with Cone Rod dystrophy and have recently started exploring different communities for the blind and visually impaired. My twin and I were born with this diagnosis. I'm curious if anyone else here has Cone Rod dystrophy or similar impairments? I'm also happy to answer any questions if needed. Cheers. ☺️
viciousSnowFlake 3 points 2y ago
I have cone rod dystrophy as well. I'm 29 and was diagnosed a few months ago. So far I've only really noticed it in my right eye except when I look at an aimsler grid with my left eye. It's starting to affect my ability to watch tv, use my phone, work on the computer, and drive.
over_the_light [OP] 1 points 2y ago
That's interesting. What type of issues have you been experiencing?
viciousSnowFlake 1 points 2y ago
There's a distortion in the middle of my right eye that's been getting worse (it really seems like the rate of deterioration of acuity has picked up since I was diagnosed). The distortion kind of looks like the swirl affect from photoshop (there's a ring of cloudiness and then in the center it's fairly clear but whatever is in the middle is kind of smooshed together and shifted to a point that it's unreadable/unrecognizable). I feel like my brain was doing a decent job at filtering it out when I have both eyes open, but since it's been getting worse vision with both eyes is getting worse as well.
When it comes to night vision I am fine as long as things stay a constant brightness. If I drive at night (rarely happens anymore) it takes a long time for my eyes to readjust to the dark after an oncoming car passes.
I'm also starting to notice an increase in photophobia and pain from bright environments or looking at a bright screen. I use dark mode whenever possible on my phone/computer. I've installed a few browser extensions to help with it along with using flux. It's getting to the point where I've started using NVDA so I can get more familiar with it while I have decent sight.
How do things look for you?
When it comes to night vision I am fine as long as things stay a constant brightness. If I drive at night (rarely happens anymore) it takes a long time for my eyes to readjust to the dark after an oncoming car passes.
I'm also starting to notice an increase in photophobia and pain from bright environments or looking at a bright screen. I use dark mode whenever possible on my phone/computer. I've installed a few browser extensions to help with it along with using flux. It's getting to the point where I've started using NVDA so I can get more familiar with it while I have decent sight.
How do things look for you?
over_the_light [OP] 1 points 2y ago
Wow. I'm so sorry you're having to deal with all of that and that it's progressive. That sounds like it would be incredibly frustrating. Has this effected your ability to work?
I experience some of the same issues with my eyes adjusting from light to dark and visa versa. I'll sometimes walk indoors and feel completely blind for a moment.
I've always felt that it was difficult to explain how I see, though. My eyes have deteriorated to a point and have been dormant for most of my life and is considered non-progressive. I have always felt like I could see everything, but with a few different conditions acting together. That being a nystagmous, floaters, flashes sometimes and being incredibly nearsided. I've always had to read, write, draw very close and have terrible acuity for distance. I think this also effects my depth perception. I'm told that my eyes are very flat? And that's something that effects my depth perception and acuity.
I experience some of the same issues with my eyes adjusting from light to dark and visa versa. I'll sometimes walk indoors and feel completely blind for a moment.
I've always felt that it was difficult to explain how I see, though. My eyes have deteriorated to a point and have been dormant for most of my life and is considered non-progressive. I have always felt like I could see everything, but with a few different conditions acting together. That being a nystagmous, floaters, flashes sometimes and being incredibly nearsided. I've always had to read, write, draw very close and have terrible acuity for distance. I think this also effects my depth perception. I'm told that my eyes are very flat? And that's something that effects my depth perception and acuity.
viciousSnowFlake 1 points 2y ago
>...how has affected your ability to work?
I work as a software engineer so I'm always on the computer fortunately and am able to use technology to help. Tbh it hasn't really hurt me when it comes to being able to do things at work, however it has impacted my mental health which causes my work to suffer. My company/team/manager have been amazing when it comes to being understanding and patient, I really am fortunate when it comes to that.
That's awesome that it's gone dormant, I hope it stays that way for you.
Are you and you twin's experiences about the same?
I work as a software engineer so I'm always on the computer fortunately and am able to use technology to help. Tbh it hasn't really hurt me when it comes to being able to do things at work, however it has impacted my mental health which causes my work to suffer. My company/team/manager have been amazing when it comes to being understanding and patient, I really am fortunate when it comes to that.
That's awesome that it's gone dormant, I hope it stays that way for you.
Are you and you twin's experiences about the same?
MahinaK 1 points 2y ago
Hey there! I have Code Rod, too! And Stargartz. I developed mine when I was 10. If you need to talk about anything feel free to shoot me a message.
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