A pleasantly measured response. For those in the know, has the deaf community calmed down in recent years? I remember a time when they were radically opposed to anything that smelled like a "cure" for something they considered more of an identity than a disability, though I haven't read anything on it in a long time.
Deaf girl is cured in world first gene therapy trial
211–220 of 351 posts
Re: Deaf girl is cured in world first gene therapy trial
#212Gene therapy has been an extremely slow game. Part of that is ethics, and part of that is technology. A single death in a single trial slowed down gene therapy for decades https://en.wikipedia.org/wiki/Jesse_Gelsinger I dedicated much of my biology training to learning how to carry out gene therapy only to conclude that it will continue to be the underdog in disease therapy for a long time. I do not expect to see lar…
Could you please share what makes you think so?
Re: Deaf girl is cured in world first gene therapy trial
#213Gene therapy has been an extremely slow game. Part of that is ethics, and part of that is technology. A single death in a single trial slowed down gene therapy for decades https://en.wikipedia.org/wiki/Jesse_Gelsinger I dedicated much of my biology training to learning how to carry out gene therapy only to conclude that it will continue to be the underdog in disease therapy for a long time. I do not expect to see lar…
> I do not expect to see large-scale germline modification for non-disease purposes in my lifetime (another 20-30 years). Could you please share what makes you think so?
Note, germline modification means making changes to future children, and all their cells would permanently be modified, and they would pass the changes on to their children. Look at what happened with Jianku He- who ignored all the advice to do this (amazingly, they eventually let him back in the lab).
Re: Deaf girl is cured in world first gene therapy trial
#214Earlier quoted context omitted.
What boggles my mind a bit is that true colorblindness glasses don't seem that difficult to me. Standard red-blue 3d glasses almost do it, it's just you need red-green differentiating glasses. I don't think this would Open the World of Color!, but it would with a bit of practice probably allow you to at least perceive a difference. But the glasses need to be visibly-differently (to a non-color-blind person) tinted. I…
RB 3GD glasses remove color to create a different image. I don't see how that would generalize to add color.
Not that this would give the same subjective experience of a person w/o colorblindness seeing red vs seeing green, but I wouldn't be surprised if it allows one to pass r/g colorblindness tests fairly well?
Re: Deaf girl is cured in world first gene therapy trial
#215Earlier quoted context omitted.
It is interesting to wonder if they'd call us gods in a good way though. Perhaps they might see it as 'playing god' instead. HN being a techie crowd tends to skew this a bit, but it's worth remembering that genetic engineering is still pretty controversial to the average person: https://www.pewresearch.org/internet/2022/03/17/americans-ar...
Those who suddenly got eyesight or hearing would call us gods in a good way. Everybody has a problem with people "playing god" until they get paralyzed or a serious illness. Then "playing god" is all they wish for.
Re: Deaf girl is cured in world first gene therapy trial
#216Earlier quoted context omitted.
I'm actually in this position a bit. I'm still young(ish) with a serious hip condition that causes me some disability. There are options for replacement that could get me to near full function, but there are drawbacks and the shear fear of surgery and replacing part of my body with metal and plastic. If I was wheelchair-bound, I don't think it would be a hard choice, but I am able to essentially do most of the things…
Do you have significant pain?
Re: Deaf girl is cured in world first gene therapy trial
#217Medical science is about the only thing in modern life that consistently delivers hope. While all the other terrible things are going on, something like this comes along and I’m just extremely happy to be alive right now.
Re: Deaf girl is cured in world first gene therapy trial
#218Medical science is about the only thing in modern life that consistently delivers hope. While all the other terrible things are going on, something like this comes along and I’m just extremely happy to be alive right now.
What's the end goal of modern medicine though? Immortality? You can perhaps reduce suffering to nil, but you can't cheat death.
Re: Deaf girl is cured in world first gene therapy trial
#219Earlier quoted context omitted.
It might be the condition I have, otosclerosis, where the bones of the middle ear fuse. The surgery, a stapedectomy, involves removing the bones and replacing them with a metallic prosthesis. Unfortunately, in my case, the calcification is also happening in my cochlea which means that at some indeterminate time in the future, I will end up losing all hearing. Not to mention that even with the prosthetic, my hearing i…
I was recently diagnosed with otosclerosis, have you found a hearing aid that works best for otosclerosis, my Doctor mentioned that most hearing aids don't work well for low frequency loss.
Re: Deaf girl is cured in world first gene therapy trial
#220Earlier quoted context omitted.
I'm actually in this position a bit. I'm still young(ish) with a serious hip condition that causes me some disability. There are options for replacement that could get me to near full function, but there are drawbacks and the shear fear of surgery and replacing part of my body with metal and plastic. If I was wheelchair-bound, I don't think it would be a hard choice, but I am able to essentially do most of the things…
Hip problems are brutal, been there before :( Mine (mostly) resolved when I addressed some other underlying issues but I was also seriously considering joint replacement for a bit! The surgery and downtime are no joke, but everyone I've talked to who went through with a replacement was glad they did. I even know at least one guy who now works on his feet all day. Not saying to just take the plunge now, but if you eve…
Good to hear you were able to mostly resolve your issue. Given your name I’m assuming you have ankylosing spondylitis - I certainly see that in joint replacement forums from time to time, often people younger than I at this point who are facing more joint issues than myself.