21 ms·

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 a

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.

nzealand 6y ago
> discovering I'd be going blind in the parking lot post appointment That is devastating. Did you get a second opinion?
- zachrip 6y ago
  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.
  - dundercoder 6y ago
    I have two mutations on USH2A. It would be spectacular if someone could repair the whole gene.
    - foofoo2 6y ago
      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=etd https://dc.uwm.edu/cgi/viewcontent.cgi?article=1007&context=... I have no experience with it, just lots of reading during this downtime.
    - advectus 6y ago
      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

nzealand 6y ago

> discovering I'd be going blind in the parking lot post appointment That is devastating. Did you get a second opinion?

zachrip 6y ago
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.
- dundercoder 6y ago
  I have two mutations on USH2A. It would be spectacular if someone could repair the whole gene.
  - foofoo2 6y ago
    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=etd https://dc.uwm.edu/cgi/viewcontent.cgi?article=1007&context=... I have no experience with it, just lots of reading during this downtime.
  - advectus 6y ago
    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