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A comment on Ask HN: I'm a software engineer going blind, how should I prepare?. Parent comment

Re:Ask HN: I'm a software engineer going blind, how should I... by zachrip on Sunday April 19, 2020 @07:45PM (#22919760)
This experience has been so humbling. I grew up in a rough household and when I had barely scraped myself past high school graduation and gotten work as a SWE and eventually made it to some fortune 50 companies I thought I had life figured out. Then I started bumping into things and struggling playing my favorite games. My eye doctor casually telling me I have RP and discovering I'd be going blind in the parking lot post appointment really knocked me on my ass.

But there are silver linings. I was born with severe hearing loss but it's stable and corrected with hearing aids. I don't have any balance issues (I have USH2A, which only results in hearing/vision loss). I'm so fortunate to have experienced all that I have and all that I will. Thank you for the kind words.

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Re:Ask HN: I'm a software engineer going blind, how should I... by nzealand on Sunday April 19, 2020 @08:34PM (#22920056)
> discovering I'd be going blind in the parking lot post appointment

That is devastating.

Did you get a second opinion?

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Re:Ask HN: I'm a software engineer going blind, how should I... by zachrip on Sunday April 19, 2020 @08:46PM (#22920128)
Yes this was 2 years ago, I ended up at Columbia Ophthalmology in NYC and they were able to get me DNA tested after another local doctor failed to assist me in doing so. USH2A is the name of the specific condition if you're curious.
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Re:Ask HN: I'm a software engineer going blind, how should I... by dundercoder on Monday April 20, 2020 @12:23AM (#22921075)
I have two mutations on USH2A. It would be spectacular if someone could repair the whole gene.
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Re:Ask HN: I'm a software engineer going blind, how should I... by advectus on Monday April 20, 2020 @01:22AM (#22921340)
Really appreciate both of your stories. Any chance you could share the specific mutation? Such a difficult to understand condition given that both of you have one or more mutations in USH2A but have different stories around hearing loss
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Re:Ask HN: I'm a software engineer going blind, how should I... by foofoo2 on Wednesday April 22, 2020 @03:50PM (#22949479)
Photobiomodulation seems promising

PHOTOBIOMODULATION IN INHERITED RETINAL DEGENERATION (2012)

"A growing body of evidence indicates that exposure of tissue to low energy photon irradiation in the far-red to near-infrared (NIR) range of the spectrum, (photobiomodulation or PBM) acts on mitochondria-mediated signaling pathways to attenuate oxidative stress and prevent cell death. "

https://dc.uwm.edu/cgi/viewcontent.cgi?article=1007&context=...

I have no experience with it, just lots of reading during this downtime.

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