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Deaf girl is cured in world first gene therapy trial

independent.co.uk

311–320 of 351 posts

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

#311

I'm 80% deaf on my left ear due to measles carried by my mom before my birth. I couldn't gather from the article whether this would help my case, but I'm hopeful regardless.

This particular treatment only works on a particular mutation, so probably not.

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

#312

Earlier quoted context omitted.

Where are young children getting surgery?

In the US there are plenty of places where children can get surgeries. This is a small sampling of the locations: The Stanford Children's Hospital [1] will provide surgeries to both minors and adults. It doesn't specify how young the children can be. The University of Illinois [2] will do surgery on people under 18, but doesn't specify how young the children can be. The University of Rochester [3] will do some surger…

Looking at the links, none of them suggest that surgeries are performed on children. Puberty blockers aren't surgery. Intersex children are surgically mutilated without their consent but adult trans people need an OK from two psychiatrists. If I had had puberty blockers (reversible) as a child, I wouldn't have had to go through something painful. I was only able to start hormones at the age of 23 when all the changes had already happened. Hormones aren't able to reverse everything. Then people complain that we don't look good enough when we were never given the chance (unless you're rich enough to be able to afford surgeries, which I'm not).

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

#313

Earlier quoted context omitted.

Are you implying that there'd be no controversy if people were able to swap parts of their bodies with others'?

I'm not sure how you came to that conclusion? If you had a functioning body part and could swap with another person that would still be cutting off a functioning body part. Just because you got another functional body part doesn't change anything. If it becomes possible in the future to just swap body parts with no issues, it would probably be less controversial, but I don't think it would really be accepted. The pro…

Why are my private bits any of your business anyway? Don't reproductive rights go both ways? I can't even have children of my own anyway since I'm married to a woman. But it all comes back to how useful I am to a cishet guy? Either I'm someone's fetish or a baby-making machine.

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

#314
post #232

Earlier quoted context omitted.

The deaf community is incredibly proud. I have a lot of respect for that. But at the same time, I don't understand it. I'm extremely visually impaired, and I've never seen the same "It's not a disability!" sentiment mirrored in the blind community. Does anyone have any insight why this might be?

Probably because in humans sight is the primary sense and hearing secondary. Deaf people face a lot of challenges, but not nearly as many as blind people (amd I say this as someone with -10 prescriptions, which is close to legal blindness without my glasses)

I think some of this is just a matter of adapting to the bodies we have (we've never had great vision), but my sister and I, who are slowly losing our sight, both agree that we'd rather go blind than go deaf.

For us, it's about the ease with which oral communication connects to others, and a deep love of music. Both of us have an easier time recognizing voices than faces, and this was true even when we were younger and our vision was mostly normal.

This isn't to say one bodily sense or one way of engaging with the world is objectively 'better' than another. I don't think that's true. I'm sure there are many people for whom their vision (or some other sense or mode of engaging with the world) is much more dear to them for their hearing, and that's not wrong, either.

> I say this as someone with -10 prescriptions, which is close to legal blindness without my glasses

Given that much of the point of the designation 'legally blind' is that the impairment is uncorrectable, this is a pretty unfortunate phrase imo, common as it is. (I have about the same level of myopia, fwiw.)

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

#315
post #238
post #232

Earlier quoted context omitted.

The deaf community is incredibly proud. I have a lot of respect for that. But at the same time, I don't understand it. I'm extremely visually impaired, and I've never seen the same "It's not a disability!" sentiment mirrored in the blind community. Does anyone have any insight why this might be?

The Deaf (capital D) community has its own special language. There's a lot of culture that comes out of that. On the other hand, the blind community has the same languages as the rest of us.

Plus in a motor vehicle driver's world, blindness presents a much more serious problem for mobility, which makes 'the blind community' more diffuse. Blind people are, unfortunately, often relatively socially isolated.

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

#316

Earlier quoted context omitted.

Are you implying that there'd be no controversy if people were able to swap parts of their bodies with others'?

No, he's implying that someone with a non-functioning body part getting a functioning donor (presumably from someone who just died and has no chance of ever needing or wanting theirs again) would not be controversial. To answer farther into your line of questioning, though, I'd personally consider replacement reproductive systems "fully functional" only if they allow having children with one's own DNA. If we were to…

The goal of all life is to make more life, is it? Not everyone wants kids. Is it my duty to be able to make kids? But what about my autism and mental illness? I thought that people didn't want people like me making kids. Or is it all about my usefulness to cishet guys? A woman is, after all, just a tool.

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

#317

Earlier quoted context omitted.

In the US there are plenty of places where children can get surgeries. This is a small sampling of the locations: The Stanford Children's Hospital [1] will provide surgeries to both minors and adults. It doesn't specify how young the children can be. The University of Illinois [2] will do surgery on people under 18, but doesn't specify how young the children can be. The University of Rochester [3] will do some surger…

Looking at the links, none of them suggest that surgeries are performed on children. Puberty blockers aren't surgery. Intersex children are surgically mutilated without their consent but adult trans people need an OK from two psychiatrists. If I had had puberty blockers (reversible) as a child, I wouldn't have had to go through something painful. I was only able to start hormones at the age of 23 when all the changes…

Please reread.

Here it is explicitly from the Rochester one

>Surgical Services – Referrals and coordination of care (as medically necessary)

>Orchiectomy – Urology (adults only)

>Gender-affirming Top Surgery – Plastic Surgery or Breast Surgery

Are you suggesting a top SURGERY is not a surgery? Why would they say adults only for the orchirctomy but not for the top surgery?

Second, puberty blockers are not always reversible. Please do not spread medical misinformation.

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

#318

I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness. I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure. But goddamnit, I want to see red.

Im the same way with my keratoconus. Tired of seeing two balls in tennis, two red lights at night, etc.

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

#319

Earlier quoted context omitted.

I'm not sure how you came to that conclusion? If you had a functioning body part and could swap with another person that would still be cutting off a functioning body part. Just because you got another functional body part doesn't change anything. If it becomes possible in the future to just swap body parts with no issues, it would probably be less controversial, but I don't think it would really be accepted. The pro…

Why are my private bits any of your business anyway? Don't reproductive rights go both ways? I can't even have children of my own anyway since I'm married to a woman. But it all comes back to how useful I am to a cishet guy? Either I'm someone's fetish or a baby-making machine.

> Why are my private bits any of your business anyway?

I think, and most people probably agree with me, that cutting off perfectly good body parts is not acceptable regardless if they are your private bits. Bringing up the private bits instead of a generic body part is attempting to make it emotional.

If somebody wants to cut off their healthy foot, people do not find that acceptable. Doctors are supposed to do no harm and cutting off the foot would be doing harm. I think most of us like the idea of doctors being there to heal us, not harm us.

Society believes in restricting what people can do with their body even if no harm comes to others. Maybe you think that is dumb, but most of society disagrees.

Here is an extreme example. We believe drunk driving should be illegal even if nobody is harmed. We don't like that behavior so we ban it. How many people complain about that?

> Don't reproductive rights go both ways?

Of course they don't. Men have no right to abort without the woman's consent. Men also cannot just give up rights to their children if they don't want to pay child support.

What makes you think we as a society want reproductive rights not being universal? Do you want men to be allowed to force the woman they impregnated to get an abortion? If not, then reproductive rights cannot be universal.

Once you start blocking reproductive rights one way you will have a difficult time stopping it in another area. Either men have to be able to give up rights to their children or society should be allowed to restrict other rights.

It sounds like you also have some sort of notion that you have a right to have a kid or something like that. I am dubious of such an argument. Could you explain why you think you have such a right?

> But it all comes back to how useful I am to a cishet guy? Either I'm someone's fetish or a baby-making machine.

Nobody said anything close to that. Please do not read into my statement anything more than the exact words.

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

#320
post #217

Earlier quoted context omitted.

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.

Because it will utterly end all societal development.

Imagine if fucking Ghengis Khan never had to die.

Or Henry Kissinger.

Or Carnegie

Our system is struggling under the immense weight of old leaders and the best they can do is pump themselves full of weird drug cocktails to have some semblance of being alive. Imagine removing the last roadblock to eternal life for the richest human alive.

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