> 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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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.
I have two mutations on USH2A. It would be spectacular if someone could repair the whole gene.
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
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.