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Deaf girl is cured in world first gene therapy trial

independent.co.uk

211–220 of 351 posts

Re: Deaf girl is cured in world first gene therapy trial

#211
“As a charity, we support families to make informed choices about medical technologies, so that they can give their deaf child the best possible start in life.”

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.

Re: Deaf girl is cured in world first gene therapy trial

#212
post #130

Gene 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?

Re: Deaf girl is cured in world first gene therapy trial

#213
post #130

Gene 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?

Two lines of argument: social opposition (people are scared by the technology and many religions strongly oppose human GMO) and lack of adequate technology (we couldn't actually make a permanent change that does what we want without side effects).

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

#214
post #178
post #132

Earlier 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.

If one removes red while the other removes green, then if something looks dark through the lens that blocks green, and looks bright in the one that doesn't block green (but blocks red), then one could tell that it is green. (and visa versa for something red)

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

#215

Earlier 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.

I'm an anesthesiologist, which curiously enough is a lacuna in pretty much every religion that has opinions about medical treatment. Oh, it's not okay to take this drug or that one, but you're totally fine with being in a medically induced coma? Whatevs, bro.

Re: Deaf girl is cured in world first gene therapy trial

#216

Earlier 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?

Pain is the main disability; most days I walk well enough that no one can tell I have issues, but the pain can make it hard to concentrate on my work. That said, some days I have little pain and so it is hard to commit to a surgery when I have a string of good days.

Re: Deaf girl is cured in world first gene therapy trial

#217

Medical 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

#218
post #217

Medical 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.

Why can't you cheat death? Excluding accidents and the like.

Re: Deaf girl is cured in world first gene therapy trial

#219
post #192
post #57

Earlier 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.

I have moderate to severe hearing loss mostly in the low frequency region from otosclerosis...I use Widex Moment 440s BTE with custom ear moulds. They sound fantastic. My only complaint is that require a necklace pendant to get Bluetooth connectivity but other than that I love them. They're expensive but worth every penny IMO.

Re: Deaf girl is cured in world first gene therapy trial

#220

Earlier 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…

Yes - it’s a bit ironic that I have an extremely rare condition (Perthes disease) that ultimately may be resolved by a very common surgery. And it is known as one of the best as far as outcomes - the Lancet called it the surgery of the century, so I do at least have some hope there.

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.

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