Blind and Visually Impaired Community
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Did your ophthalmologist ever refer you to clinical trials? (self.Blind)
submitted by [deleted]
[deleted]
EffectiveYak0 2 points 1y ago
Nope. I think optic nerve regeneration is probably quite a ways away if it will ever be accomplished.
TechnicalPragmatist 2 points 1y ago
Never at one point I had some of the best when I was young was a patient at ucla, or pretty good at least.
I have peter’s it’s fairly rare so I don’t think there is even such a thing.
I have peter’s it’s fairly rare so I don’t think there is even such a thing.
505Griffon 2 points 1y ago
Nope.
It was my own doing. Upon diagnosis of RP, I did all the research I could. I found out I had mediocre health insurance and they didn't want to pay for certain things. Joining a clinical trial got me better care and a lot more information about my condition and progression. Other than the travel, I'd do it again in a heart beat.
It was my own doing. Upon diagnosis of RP, I did all the research I could. I found out I had mediocre health insurance and they didn't want to pay for certain things. Joining a clinical trial got me better care and a lot more information about my condition and progression. Other than the travel, I'd do it again in a heart beat.
DrillInstructorJan 1 points 1y ago
I was considered for implant surgery but they decided my case was too unusual and that it wouldn't tell them much. I don't remember being that devastated at the time though I'd have taken it if it was available.
Given the hassle people have had with the particular implant in question, with the company going out of business, I'm sort of pleased it didn't happen. I'd be walking around with a bit of obsolete technology in my head.
Given the hassle people have had with the particular implant in question, with the company going out of business, I'm sort of pleased it didn't happen. I'd be walking around with a bit of obsolete technology in my head.
[deleted] [OP] 1 points 1y ago
[deleted]
DrillInstructorJan 1 points 1y ago
It would have been a retinal implant which was sort of the problem as they weren't even sure it would actually work for me. I'm not going to go into the details but most of the research is aimed at the most common medical problems, which is totally sensible.
I think what's really important is that nobody should be holding out for this sort of stuff. I will take it when it comes, but there are people who will tell you it's coming soon. If I'd waited for it I would have wasted the last twenty years and the best years of my life waiting, and that can't be smart for anyone.
I think what's really important is that nobody should be holding out for this sort of stuff. I will take it when it comes, but there are people who will tell you it's coming soon. If I'd waited for it I would have wasted the last twenty years and the best years of my life waiting, and that can't be smart for anyone.
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