Let them eat cake! - Page 12

12-07-2006, 05:40 PM

I don't care id you believe me, I have a genetic disorder, one that causes a all of what is wrong with me, as well as having caused some birth defects. I know what is wrong with me and how many times I have had it checked and by how many specialists.
I also know what the odds were, that is why it has no name, yet.
This is why I did not want to discuss this and why I am done with this thread.
I hope you are going to be in a lab and not actually working with sick individuals... I really do.

DanaC · 12-07-2006, 05:45 PM

I bet the first person to have any genetic condition that causes disparate symptoms (and there are many such) has been treated to the same skepticism. Everyone needs precedence as proof. Bit of a problem if you are the one setting that precedent.

lumberjim · 12-07-2006, 05:52 PM

let's call it Rage's syndrome.

DanaC · 12-07-2006, 06:02 PM

What I find really disheartening about this whole discussion, is that I really did think that America was way ahead of the Uk on disablement issues. Not in terms of financial assistance, but in terms of general attitudes and understandings. I've been quite...taken aback by some of the general assumptions displayed here. I can only hope and assume that it's no more representative of American culture than some of the prejudices displayed by Brits here are representative of our culture.

9th Engineer · 12-07-2006, 06:08 PM

I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"

DanaC · 12-07-2006, 06:14 PM

Hmm,

Lessee...Gays *tick*, Arabs *tick*, People with disability *tick*, the poor *tick*.....hey, 9th, have you done blacks, women and the Irish yet? I think you may be looking at a full house.

keryx · 12-07-2006, 06:21 PM

Quote:

Originally Posted by 9th Engineer

Rzkn, it doesn't matter how rare it is, if it's out there there's a name for it.

Not necessarily.

Whatever my dad picked up in Vietnam has yet to be identified and named. For 40+ years he's suffered from this. It has various symptoms that are treated as best as they can be, but no cure forthcoming.

Not to mention the unknown infection Mr Fargon got at the VA, unable to be cultured. Suspected to have been transmitted from one of his three room mates, all Vietnam vets.

If Rkzn says his condition does not have name, I am inclined to believe it.

busterb · 12-07-2006, 06:22 PM

Quote:

Originally Posted by 9th Engineer

Rzkn, it doesn't matter how rare it is, if it's out there there's a name for it. What you are describing are symptoms which are isolated from each other, you would have to show that some common factor connects all of your symptoms for it to be a single 'condition'. The name for what you seem to have is 'Man with many painful injuries'.

Not so.Mike went to Mayo in Jacksonville and the DR told him, If I can't find it I can't fix it. After 3 days of test. WTF.

Griff · 12-07-2006, 06:33 PM

My friends son went without a diagnosis throughout his short life. I believe they named it after his autopsy. Genetic disorders don't always fit neatly into little boxes and folks don't generally have unlimited time and money to pursue a name. Ease their suffering now, work on the label later.

9th Engineer · 12-07-2006, 07:01 PM

I've said nothing about whether he is in pain or not, I can't say anything about that one way or the other. What I can dispute is whether he's right in saying he has a genetic condition that has no name, or whether he's in pain and his doctor doesn't know why.
Really, if doctors can't find what's causing the problem, then how can he make such detailed conclusions? And why can't I look at the information if it's in public health journals??

Aliantha · 12-07-2006, 07:24 PM

My older brother died when he was 5, I was three. He died of a genetic disorder. My cousin has it but is still alive. They think it might be Noonans disorder or Chromosone X, but they're not really sure. Whatever the problem is, their symptoms are very similar, but not exactly the same. They can't name it really, but it causes severe intellectual disablement along with physical disabilities - severe enough to kill a child at 5 yrs of age.

9th, you're being incredibly short sighted and rude. Think about things before you go posting them. You don't know shit about what you're saying. That's clear to everyone here.

12-07-2006, 08:16 PM

Quote:

Originally Posted by 9th Engineer

I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens?
Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?"

Excuse me, but I have yet ti get a reply from you to my pm where I offered to send you a bibliography of medical publications regarding the effects of carbon monoxide poisoning. I don't think you want the science, I think you want to revel in your prejudice. Tell me what scientific coursework you are now taking. Molecular genetics? Cell biology? Human physiology? Embryology? Organic chemistry? You seem ignorant in all these areas. You also seem extremely ignorant of the scientific method.

A person with an extremely rare genetic disorder goes into his family doc. The doctor flounders around and refers you to a specialist. The specialist suspects a genetic disorder, but there's nothing in the literature. Now, if that specialist is affiliated with a University medical program and has the time and interest, he may apply for a government grant to find out more about this disease. But congress has just cut research funding in favor of killing people in Iraq. Three years later, the scientist gets the funding to begin his study. He then has to find a statistically acceptable number of patients with the same symptoms. Once he's done that, he and his grad students have to do research involving a double blind study that will be acceptable to a scientific, peer reviewed journal such as JAMA.
JAMA accepts the paper for publication and it comes out 6 months later. The government finally adds the condition to its list of disabling conditions 5 years later.

Meanwhile, RK has lost everything he has, is sicker than ever, and living on the streets. (God forbid).

Wake up 9th, I don't know who you are, but you are neither a scientist, nor are you living in the real world.

orthodoc · 12-07-2006, 08:26 PM

Aliantha's description is typical of a chromosomal disorder. Rkzen's description, per his post, does not fit the pattern of these disorders. Note: I am saying nothing about his symptoms, nor his disability, and I am not stating that he does not have a rare disorder that has never been seen before and has no name, and which is written up in medical texts and journals that he declines to cite. Rkzen listed several things as part of his medical condition, said they were part of a genetic disorder that is so rare as to have no name, and then declined to give any further information. That is his prerogative. I am sure he does know what he has.

Aliantha · 12-07-2006, 08:28 PM

And like everyone else, he has a right to his own privacy.

9th Engineer · 12-07-2006, 08:34 PM

Really? All I did was ask for the name of the journal that published the articles he keeps mentioning. I asked how he knew what he said he knew, he simply repeated the same lines again. Look at each of my posts, I never said he was faking a disorder, I even said I was not questioning whether or not he was in pain. I simply questioned asked for information which he had already said was public.
I admit saying that his story was a long shot, and it is. The claim of a brand new disorder with no previous documentation is not something to sneeze at.
I have not done anything rude Ali, I just asked him to post the journal names. I asked for information he has said is readily available.

Mari, I have not responded to you because of a number of different reasons, the first of which is finals (2 down, 5 to go). I won't have time to really read over the articles until the end of next week, so feel free to send them now but I want to read them all before replying.
I don't know how you plan to back up your claim about my coursework, but I have taken or am currently taking all of those but the human phys which I am taking Junior year. This semester I'm taking cellular engineering, which covers cellular systems and organic chemistry as well as genetic engineering, and organic chemistry.
I know perfectly well that disorders take years to collect data on, but again, he said that there were already published articles on this!!! I still wait for those if he chooses to release them.

12-07-2006, 05:52 PM	#168
lumberjim I can hear my ears Join Date: Oct 2003 Posts: 25,571	let's call it Rage's syndrome. __________________ This body holding me reminds me of my own mortality Embrace this moment, remember We are eternal, all this pain is an illusion ~MJKeenan

12-07-2006, 06:02 PM	#169
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	What I find really disheartening about this whole discussion, is that I really did think that America was way ahead of the Uk on disablement issues. Not in terms of financial assistance, but in terms of general attitudes and understandings. I've been quite...taken aback by some of the general assumptions displayed here. I can only hope and assume that it's no more representative of American culture than some of the prejudices displayed by Brits here are representative of our culture. Last edited by DanaC; 12-07-2006 at 06:06 PM.

12-07-2006, 06:08 PM	#170
9th Engineer Bioengineer and aspiring lawer Join Date: Apr 2006 Location: Pittsburgh Posts: 872	I just want to see the science, nothing more. If there hasn't been studies on this then how does he even know it's genetic? He's never mentioned a medical background, and even if a specialist told him it might be genetic they would need to preform tests under controlled conditions to confirm that, which would almost certainly lead to followup studies and publications in the event of a new genetic disorder. Why is it that everyone screams that nothing which science can't or hasn't proved is real, until something like this happens? Now who's the one looking sideways at someone and saying "He want's proof?? Why can't he just understand that he needs to believe and not ask too many questions?" __________________ The most valuable renewable resource is stupidity.

12-07-2006, 06:33 PM	#174
Griff still says videotape Join Date: Feb 2001 Posts: 26,813	My friends son went without a diagnosis throughout his short life. I believe they named it after his autopsy. Genetic disorders don't always fit neatly into little boxes and folks don't generally have unlimited time and money to pursue a name. Ease their suffering now, work on the label later. __________________ If you would only recognize that life is hard, things would be so much easier for you. - Louis D. Brandeis

12-07-2006, 07:01 PM	#175
9th Engineer Bioengineer and aspiring lawer Join Date: Apr 2006 Location: Pittsburgh Posts: 872	I've said nothing about whether he is in pain or not, I can't say anything about that one way or the other. What I can dispute is whether he's right in saying he has a genetic condition that has no name, or whether he's in pain and his doctor doesn't know why. Really, if doctors can't find what's causing the problem, then how can he make such detailed conclusions? And why can't I look at the information if it's in public health journals?? __________________ The most valuable renewable resource is stupidity.

12-07-2006, 05:40 PM	#166
rkzenrage Guest Posts: n/a	I don't care id you believe me, I have a genetic disorder, one that causes a all of what is wrong with me, as well as having caused some birth defects. I know what is wrong with me and how many times I have had it checked and by how many specialists. I also know what the odds were, that is why it has no name, yet. This is why I did not want to discuss this and why I am done with this thread. I hope you are going to be in a lab and not actually working with sick individuals... I really do.

12-07-2006, 05:45 PM	#167
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	I bet the first person to have any genetic condition that causes disparate symptoms (and there are many such) has been treated to the same skepticism. Everyone needs precedence as proof. Bit of a problem if you are the one setting that precedent.

12-07-2006, 06:14 PM	#171
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	Hmm, Lessee...Gays tick, Arabs tick, People with disability tick, the poor tick.....hey, 9th, have you done blacks, women and the Irish yet? I think you may be looking at a full house.

12-07-2006, 07:24 PM	#176
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	My older brother died when he was 5, I was three. He died of a genetic disorder. My cousin has it but is still alive. They think it might be Noonans disorder or Chromosone X, but they're not really sure. Whatever the problem is, their symptoms are very similar, but not exactly the same. They can't name it really, but it causes severe intellectual disablement along with physical disabilities - severe enough to kill a child at 5 yrs of age. 9th, you're being incredibly short sighted and rude. Think about things before you go posting them. You don't know shit about what you're saying. That's clear to everyone here. __________________ Kind words are the music of the world. F. W. Faber

12-07-2006, 08:26 PM	#178
orthodoc Not Suspicious, Merely Canadian Join Date: Oct 2006 Posts: 3,774	Aliantha's description is typical of a chromosomal disorder. Rkzen's description, per his post, does not fit the pattern of these disorders. Note: I am saying nothing about his symptoms, nor his disability, and I am not stating that he does not have a rare disorder that has never been seen before and has no name, and which is written up in medical texts and journals that he declines to cite. Rkzen listed several things as part of his medical condition, said they were part of a genetic disorder that is so rare as to have no name, and then declined to give any further information. That is his prerogative. I am sure he does know what he has. __________________ The greatness of a nation and its moral progress can be judged by the way its animals are treated. - Ghandi

12-07-2006, 08:28 PM	#179
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	And like everyone else, he has a right to his own privacy. __________________ Kind words are the music of the world. F. W. Faber

12-07-2006, 08:34 PM	#180
9th Engineer Bioengineer and aspiring lawer Join Date: Apr 2006 Location: Pittsburgh Posts: 872	Really? All I did was ask for the name of the journal that published the articles he keeps mentioning. I asked how he knew what he said he knew, he simply repeated the same lines again. Look at each of my posts, I never said he was faking a disorder, I even said I was not questioning whether or not he was in pain. I simply questioned asked for information which he had already said was public. I admit saying that his story was a long shot, and it is. The claim of a brand new disorder with no previous documentation is not something to sneeze at. I have not done anything rude Ali, I just asked him to post the journal names. I asked for information he has said is readily available. Mari, I have not responded to you because of a number of different reasons, the first of which is finals (2 down, 5 to go). I won't have time to really read over the articles until the end of next week, so feel free to send them now but I want to read them all before replying. I don't know how you plan to back up your claim about my coursework, but I have taken or am currently taking all of those but the human phys which I am taking Junior year. This semester I'm taking cellular engineering, which covers cellular systems and organic chemistry as well as genetic engineering, and organic chemistry. I know perfectly well that disorders take years to collect data on, but again, he said that there were already published articles on this!!! I still wait for those if he chooses to release them. __________________ The most valuable renewable resource is stupidity.

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