Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Hunting Down My Son's Killer

matt.might.net

Post reply on HN
Print view View original

261–270 of 339 posts

Re: Hunting Down My Son's Killer

#261

Post by Domenic_S »

quantumhobbit wrote: post #168
krschultz wrote: post #115

Earlier quoted context omitted.

To be fair to (most) doctors, especially your primary physician, have to diagonose a huge range of conditions. The edge cases are rare and so they are not as well versed on them. System specialists are an order of magnitude better. I.e. going to an Ear, Nose & Throat doctor if you have Asthma. Disease specialists are the pinacle. Sometimes these are researchers rather than normal doctors.

It is actually counter-productive for doctors to learn too much about rare diseases. When a patient presents with a set of symptoms, the doctor has to decide whether the patient has a boring common disease or the cool disease which is 100 times rarer. Human beings can't make good judgements about probabilities like that. If every doctor were trained to recognize a rare auto-immune disease that looks just like the flu…

It is far more common for a doctor to underdiagnose a patient that presents with flu systems but actually has the "cool, rare disease". I just read a good article on this, I'll try and look it up.

Re: Hunting Down My Son's Killer

#262

Post by Mz »

mattmight wrote: post #230
Mz wrote: post #201

Earlier quoted context omitted.

Sorry I wasn't clear. I am currently looking at info on NGLY1 and trying to parse out its exact function in order to try to understand the commonalities this seems to have with my condition. "Lacks x enzyme" doesn't give me a picture of what functions are missing. I am not a medical professional. I need laymen's explanations of specific functionality, which are quite hard to come by. Thanks for replying.

N-Glycanase is responsible for removing N-linked glycans from misfolded glycoproteins.

Thanks for answering. Is that absolutely the only thing it does? Because I am getting the vague impression the miscoded protein has some other functions as well.

Re: Hunting Down My Son's Killer

#264

Post by tmeasday »

Domenic_S wrote: post #261
quantumhobbit wrote: post #168

Earlier quoted context omitted.

It is actually counter-productive for doctors to learn too much about rare diseases. When a patient presents with a set of symptoms, the doctor has to decide whether the patient has a boring common disease or the cool disease which is 100 times rarer. Human beings can't make good judgements about probabilities like that. If every doctor were trained to recognize a rare auto-immune disease that looks just like the flu…

It is far more common for a doctor to underdiagnose a patient that presents with flu systems but actually has the "cool, rare disease". I just read a good article on this, I'll try and look it up.

I'm pretty sure that's, by definition, untrue. Unless people are never mis-diagnosed with rare conditions, which is patently false.

Re: Hunting Down My Son's Killer

#265

Post by mattdeboard »

gcheong wrote: post #260
mattdeboard wrote: post #258

Earlier quoted context omitted.

> a better word for the viewpoint that everyone should have kids I have a good one: "opinion". I have another great one for when someone won't leave you alone and insists that you hold their opinion or there's something wrong with you: "fanatic". See also: "jerk", "creep", "weirdo", "person I avoid". I really don't get these quasi-political categorizations. If someone's being a jerk about their opinion, they're a jer…

That's like saying we shouldn't call sexism sexism because its just the opinion of a few men that women are inferior and if they are being jerks about their opinion then they are just being jerks. No, having the word pronatalism calls out the fact that it is just a viewpoint. And it is one shared and promoted by many - often to the detriment of those who think otherwise. Having names for things helps in clarifying wh…

I guess what I really want to say is that the world is so divided and polarized, can't we just this one time drop the anti- and pro-whatever and just say that someone disagrees with us and move on?

Re: Hunting Down My Son's Killer

#266

Post by [deleted] »

sneak wrote: post #169
mcmatterson wrote: post #93

Earlier quoted context omitted.

As a parent of a child who was born with a near-fatal congenital disorder (malignant sacrococcygeal teratoma), I can attest that the decision to try for #2 is a difficult one that we're still wrestling with. On the one hand ours was a one-off event and subsequent kids should be fine. We've always wanted two, and it's been such a wonderful experience that we want more of. So there's that. On the other hand, the months…

To be clear: I think it's unconscionable to conceive a child while there are un-adopted ones, even if it's your first and guaranteed to be healthy. There are perfectly good babies out there that need love and care, and by making your own you are basically saying "fuck them, the one that shares my DNA is better".

[deleted]

Re: Hunting Down My Son's Killer

#267

Post by sevenstar »

nitrogen wrote: post #250
sevenstar wrote: post #127

Earlier quoted context omitted.

Thanks, it looks like the medical industry is trying to bury my post.

Just so you are aware, your posts on this thread have probably gotten your account automatically banned for excessive downvotes and flags. You are probably being downvoted because you are giving potentially life-threateningly bad advice, not because "they" are trying to bury your post.

Not banned. I will not respond to trolls who want to remain ignorant. (http://www.naturalnews.com/010038.html)

Re: Hunting Down My Son's Killer

#268

Post by [deleted] »

mattdeboard wrote: post #265
gcheong wrote: post #260

Earlier quoted context omitted.

That's like saying we shouldn't call sexism sexism because its just the opinion of a few men that women are inferior and if they are being jerks about their opinion then they are just being jerks. No, having the word pronatalism calls out the fact that it is just a viewpoint. And it is one shared and promoted by many - often to the detriment of those who think otherwise. Having names for things helps in clarifying wh…

I guess what I really want to say is that the world is so divided and polarized, can't we just this one time drop the anti- and pro-whatever and just say that someone disagrees with us and move on?

[deleted]

Re: Hunting Down My Son's Killer

#269

Post by gcheong »

mattdeboard wrote: post #265
gcheong wrote: post #260

Earlier quoted context omitted.

That's like saying we shouldn't call sexism sexism because its just the opinion of a few men that women are inferior and if they are being jerks about their opinion then they are just being jerks. No, having the word pronatalism calls out the fact that it is just a viewpoint. And it is one shared and promoted by many - often to the detriment of those who think otherwise. Having names for things helps in clarifying wh…

I guess what I really want to say is that the world is so divided and polarized, can't we just this one time drop the anti- and pro-whatever and just say that someone disagrees with us and move on?

The thing is that I think the term came into use as somewhat of a backlash by those who are tired of having to explain over and over to the vast majority of people questioning them why someone might choose not to have kids and then being dismissed as anti-kid, abnormal or worse. I think once society gets to the point where the majority of people finally get that it is just a choice, and I believe we will get there eventually, it won't be as much an issue.

Re: Hunting Down My Son's Killer

#270

Post by derleth »

Mz wrote: post #161
sevenstar wrote: post #127

Earlier quoted context omitted.

Thanks, it looks like the medical industry is trying to bury my post.

I am not part of the medical industry. I run an alternative health site where I talk about my non drug approach to health issues. Doctors generally want nothing to do with me and I have gotten far harsher criticism than what has been doled out here to you. I just happen to believe colloidal silver is bad advice.

> Doctors generally want nothing to do with me

Doctors are generally quite receptive to non-drug therapies that actually work.

Post reply on HN