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Deaf girl is cured in world first gene therapy trial

independent.co.uk

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

#241

Post by sircastor »

arjie wrote: post #141

My wife and I are selecting which embryos to implant because we have a related condition (this one is a mutation in OTOF, we have one in GJB-2). Being able to implant the embryos affected with this condition (carrying two copies of the gene - mine and my wife) would increase the number of viable embryos we have by 50%. It won't be in time for us to actually implement unless we're down to our last few embryos through…

I don't have anything to offer about your comment, but good luck! We did in-vitro and it was a long, stressful, expensive process. I hope you're successful and find parenthood to be fulfilling and joyful. (Ours is in Kindergarten :) )

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

#242

Post by noman-land »

delecti wrote: post #46
noman-land wrote: post #31

Earlier quoted context omitted.

There is an entire class of YouTube video of the first moments that people see color, or hear, and it is absolutely, without question, the most joyous and wonderful class of video out there. Just so many happy tears. Little kids hearing their mother's voice for the first time. Friends seeing color for the first time after being given corrective glasses as a gift. Highly recommended watching.

Unfortunately most of those videos about the glasses are basically staged. Some of those companies have gotten in trouble for making false claims.

Wow I had no idea. I didn't realize it was possible to become even more cynical about the bullshit people will get up to for a couple bucks.

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

#243

Post by hnick »

codeulike wrote: post #193

How it actually works (from https://www.fiercebiotech.com/biotech/little-protein-factory... ) DB-OTO is a cell-selective AAV gene therapy for children with hearing loss stemming from a mutation to the otoferlin gene. The otoferlin protein is expressed in the sensory hair cells of the ear, which have tiny cilia that move as vibrations come into the ear. These cells help signal between the auditory nerve and the hair c…

Sorry just wanted to clear this up - do you mean it delivers an extra set of DNA that does its thing alongside what is already there, rather than editing the main sequence like CRISPR wants to?

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

#244

Post by noman-land »

jeffwass wrote: post #58
noman-land wrote: post #31

Earlier quoted context omitted.

There is an entire class of YouTube video of the first moments that people see color, or hear, and it is absolutely, without question, the most joyous and wonderful class of video out there. Just so many happy tears. Little kids hearing their mother's voice for the first time. Friends seeing color for the first time after being given corrective glasses as a gift. Highly recommended watching.

As the father of a deaf girl who had cochlear implant surgery a few years ago, I despise these videos for misleadingly representing the reality of the situation for most patients. Those videos you mention are designed to invoke “happy-feelies” to maximise engagement and monetisation, nothing more. The doctors warned us not to expect any reaction in our daughter like in those videos. Even so, I wasn’t prepared for jus…

Wow I truly had no idea about this. Thanks for sharing your personal experience and setting the record straight. I wish you and your family nothing but positivity and good luck in life.

Every day I discover a new way that humanity has disappointed me.

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

#246

Post by squigz »

wl wrote: post #238
squigz wrote: 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.

I do suppose that makes a lot of sense. I imagine it's twofold, too: having your own language probably instills a sense of community, which is heightened by the isolation one feels from being so disconnected from so many other communities (including society at large)

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

#247

Post by jhbadger »

squigz wrote: post #232
sandworm101 wrote: post #160

Earlier quoted context omitted.

>> so excited because future kids won't have to endure the same. When cochlear implants became routine there was a brief protest by the deaf and hard-of-hearing community. The line between people with a disability and a person who is simply different is a longstanding debate. How and when medicine should intervene is a hot button issue. I had a relative born with a malformed ear canal. The doctors rushed to get her t…

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)

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

#248

Post by AlwaysRock »

sh4rks wrote: post #217
alsetmusic wrote: post #71

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.

I mean... Let's cure cancer and then worry about the end goal.

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

#250

Post by jerf »

lupire wrote: post #178
jerf wrote: 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.

It wouldn't. It would subtract, but differently for each eye. Differential subtraction between two eyes is not addition, but it has certain characteristics in common with it.
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