3 ms·
I have the same disease as Andrew. Well, sort of. There are many variants of retinitis pigmentosa. From what I can tell, I am much further along in my progressi
by kolanos 3y ago
I have the same disease as Andrew. Well, sort of. There are many variants of retinitis pigmentosa. From what I can tell, I am much further along in my progression for the same age.
This story was a good read and for the most part up lifting. It only really touches on the dark side of blindness, pun intended. When I was diagnosed I found solace in Jim Knipfel's accounts of dealing with RP, the most famous book likely being Slackjaw. Knipfel never pulled punches, he wrote about the raw harsh reality and squeezed black comedy out of it. While everyone around me was trying to be encouraging about my predicament, Knipfel gave validation to how I really felt about RP and could make me laugh about how fucked I was. If you want to see the other side of blindness I recommend Slackjaw, but be warned, it is basically the counter point to this story.
- hackernewds 3y agoMaybe it is hard to summarize a whole account, but would you care to detail your experience further? Genuinely curious
- roygbiv2 3y agoMy 18 month old has ushers, we're dealing with the hearing loss but I'm dreading the day when we have to tell him about his eyes. We've got a few years to go before that day, at a loss to when/how that's going to happen.
- soligern 3y agoIf I were you I would begin experimenting with gene replacement therapy. It seems like a straightforward fix in the case of Usher’s. In the worst case scenario there are things you can try in your own garage.
- roygbiv2 3y agoMy limited understanding is that the gene involved is very large and therefore difficult to use in traditional gene therapy, though I have obviously very limited knowledge in this.
- dcreemer 3y agoI too have a child with Ushers (1F). We told him at age 10, though obviously it didn't really register until some years later. Please feel free to reach out to me.
- roygbiv2 3y agoThank you, I will take you up on that offer at some stage.
- hitsurume 3y agoI also have RP, was diagnosed a year ago. I'm tankful for now I can still work and use a computer but I can no longer read a book, paper documents. I'm hoping science can one day help us as I would love to see clearly one day.