Blind and Visually Impaired Community
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Cone dystrophy or possibly mild Stargardts (self.Blind)
submitted by bannable0ffense
I'm 29 and kust got back from the retinal specialist. Was told I either have cone dystrophy or a mild case of stargardts (my sister has stargardts).
They did multiple tests, can't remember them all; they took multiple pictures of my retina where they had me look into a machine with a light target (with and without dye being injected), checked me for color blindness, and a fovea picture. They took a DNA sample to send off and scheduled an ERG in about a month.
I'm fucking scared...I can't do my job if I can't read a computer screen, I can deal with not being able to see color, but the loss of visual acuity is going to destroy my career and my ability to provide for my family...
Sorry for the dump, I'm just freaking out.
They did multiple tests, can't remember them all; they took multiple pictures of my retina where they had me look into a machine with a light target (with and without dye being injected), checked me for color blindness, and a fovea picture. They took a DNA sample to send off and scheduled an ERG in about a month.
I'm fucking scared...I can't do my job if I can't read a computer screen, I can deal with not being able to see color, but the loss of visual acuity is going to destroy my career and my ability to provide for my family...
Sorry for the dump, I'm just freaking out.
KillerLag 3 points 3y ago
Depending on what your job is, there is a fair bit of accessibility technology to help with that. Has your eye doctor made a referral to a vision loss agency yet? It may be worth it to get some training early.
bannable0ffense [OP] 1 points 3y ago
I'm a software engineer.
No referral yet. I have to wait a month for the genetic test to come back (this is to rule out stargardts) and then I'll have an ERG scan. I'm assuming that will influence what comes next.
No referral yet. I have to wait a month for the genetic test to come back (this is to rule out stargardts) and then I'll have an ERG scan. I'm assuming that will influence what comes next.
refrigagator 1 points 3y ago
Check out emacspeak I’m going through something similar but I’m an iOS dev and Xcode doesn’t have anything like it but I’ve been playing with emacspeak to get familiar.
KillerLag 1 points 3y ago
Are you a mac or windows user? You can check into some adaptive software on your own, especially with youtube.
Most people I know with Stargardt's retain enough vision they can use screen magnifiers.
Most people I know with Stargardt's retain enough vision they can use screen magnifiers.
bannable0ffense [OP] 1 points 3y ago
Windows.
I started reading about NVDA for a screen reader but haven't looked into screen magnifiers.
I started reading about NVDA for a screen reader but haven't looked into screen magnifiers.
KillerLag 1 points 3y ago
https://www.youtube.com/watch?v=EEN79RRvKqE
Here is a quick intro. The video is 6 years old, so there has been a few upgrades since.
Here is a quick intro. The video is 6 years old, so there has been a few upgrades since.
Kylefornicationn 1 points 3y ago
I mean, I don’t want to sound insensitive, but stargatdt’s really isn’t that bad... the worst cases of stargatdt’s can still see pretty well
bannable0ffense [OP] 1 points 3y ago
My sister has it and is legally blind in one eye and she's only 30.
Kylefornicationn 1 points 3y ago
I guess its all relative, I have statgatdt’s, it is very advanced... has almost no impact on my life
bannable0ffense [OP] 1 points 3y ago
From what I remember, the pictures of my retina didn't look like stargardts with the bright yellow shards...
bannable0ffense [OP] 1 points 3y ago
Well I hope I have stargardts then lol.
Cleeth 1 points 3y ago
I have congenital degenerative cone dystrophy. If you'd like to talk about it. Feel free to reach out <3
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