tail post
 

Y'all are talking about one individual person, right? Ah hell, let's lump all "disabled people" together. "They" are "all the same" right?

pussy

'Those people' refers to the people I represent; the echoes, refer to this thread: the attitudes displayed to Mari's condition; the legions of armchair neurologists/psychiatrists/fraud detectors; the experiences brought to the debate by several other posters; and finally, the experiences I had during a prolonged illness in my childhood, teenage years and early twenties, which I started to post about and then decided to erase and start again, because a significant proportion of the people posting here cannot be trusted with details of such a personal experience.

well, we've got that going for us then, i guess.

yup.

What the hell? I was looking for a real answer Dana. Who here gets picked on for anything other than the bullshit they post?

I'm all out of answers Jinx, I have plenty of questions, but frankly I'd rather not know the answers to them.

I guess that would be the one who doesn't post BS......


now, who's going to cast the next stone?

The innocent of course :P

Can we just get back to the cricket now???

Yes....for once yes.

You lot copped another thrashing. ;) Shall we do a rehash? lol

*grins*

Losing at cricket is what we do....it's our thing.

And you do it so well. :) Not to mention often...hehehe

That's the trouble with you ozzies.... you don't recognise what all true-blue Brits are taught.... it's not the winning that counts, it's the taking part...




*SIGHS* I guess we'll never make gentlemen of the colonials....

Too bloody right you wont mate! ;)

btw...only losers say things like that Jay. :D

That's old thinking, Ali..... modern PC atitudes are all-inclusive, non-combatant and recognise that all persons have applicable skill-sets, and seek to discover the areas where those skill-sets might best be deployed....


oh, and you mis-spelled 'lu53rz'...

Ahuh...and if you choose to participate in a sport which is obviously outside your skillset, you sometimes look like a lu53r. ;)

It's all about transferable skills these days.

mmm... 'scuse me (see how polite I am, being a Brit?) isn't this about the ashes? which.... refresh my memory here... WHO won last year?

For the first time in HOW many years? lol

We don't win often....but my when we do, we win well.

lol...you just keep telling yourself that Dana.

works for me hun *grins*

The trouble with you lot is, you sent the best of you overseas. ;) If you'd just kept a bit of the better stock, you might do a little better. :)

ahhhhh....you've unwittingly stumbled onto our supersecret, 'sleeper' programme.

lmao...it's obviously not that supersecret.

hey....we're British, we don't do proper secrets, just commonly understood things that nobody talks about.

It's rather ironic that your best secret agent is a figment of someone's imagination huh? lol

That's exactly what we want you to think.....nyah....nyah nyah.....oh hang on, no that's right. Yep.

:)

I was always oppossed to Transportation.... we should have hanged them....

Yeah well, had you done that, you might have been able to win a match of cricket. :)

Cock

http://health.groups.yahoo.com/group/IDA/messages

You have to sign up as a member, though, and I warn you that they will not exactly love you if you show them the same attitude as you have me.

It's "funny" I have been told by the govt. and my ins. company that "eventually" they will have to pay and they know it, they are just putting it off for as long as they can because I am young (how long I have to live non-withstanding).
Problem is that what is wrong with me is so rare there is no name for it. What they are doing is taking each of my symptoms separately...
You can work with a herniated disk (I don't know about three, but there you go), advanced arthritis, osteoporosis, nerve damage, liver damage, broken bones, etc, etc... so they are denying the claim as many times as they can get by with.
I have one more time of just filing before getting into the review board with a lawyer with them... again.
When we get our paperwork together, I'll contact ya', thanks a lot.

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'.

They are not isolated from each other, it is a genetic issue, not so easy to show in short-hand (they system is set-up to deny complex disorders) and how do you know so much about this? I have not discussed my disorder in detail here... you assume much, as ever.

I have, and will not, discuss all of my disorders or how I know about other's experiences with different types of illness.
There is a lot of the last acceptable prejudice in here...

What I'm refering to is your statement about it being so rare it has no name, nonsense. If research has proven that there is a genetic corralation between those symptoms then it has been named. If you don't want to give details about yourself then that's fine, although you could just post a link to the medical journal that published the study on the genetics.

LOL... I love that you are so transparent. My condition is genetic, it does not currently have a name. The only person who may have had it, that we know of was a great uncle. I am in journals for several of my conditions (a medical textbook for my brain) and could give a shit if you believe me. Your respect or belief in me is a thing that I hold in less regard than something I ate yesterday.

As for schizophrenia and what those that suffer from it can or cannot do, the degrees of that disorder are so extreme as to make that conversation impossible to have on that level. Depression is currently listed as a form of it.

Why is this about my respect or belief in you? You said something I thought was out of whack and said so, all I asked was that you post some other information to clarify what you said. You must know the names of the journals you mentioned, I have access to all the medical journals at the university so it would be simple for me to look up this stuff for myself. If you aren't comfortable with me finding your real name (unless you somehow had it omitted from the study?) then just say so, don't make this personal.
You arn't going to win alot of trust by saying that you are the either the only person who has ever had this condition or a close second and then refusing to point to some literature on the topic. Now there's another posibility entirely, do these journals say that they have found that your symptoms are part of a larger genetic disorder? Or do they say that there may be a connection? Or for that matter is there one which covers this at all, you said several of your conditions which insinuates that they aren't talking about a singe genetic condition.
Having a disorder is not a licence to get angery and rude to anyone who asks you about it. Even if I was directly questioning the validity of your claims, then you should point me in the direction of the studies which support your statements, not claim that I am transparent because I don't take the word of someone I don't know except over an internet message board as infallible.

9th, you are fulfilling rkzenrage's prophecy that he will be turned on next after Mari. You're making him more nervous.

9th, explain to me why anyone needs to show that they are, actually, sick? There is nothing "out of whack" about any of my statements.
I have a low opinion of you based on your actions in this forum, long before this thread.
You are showing that what I stated about what was to happen to anyone discussing their illness is true.

The last acceptable prejudice. I think that's very well put.

Do you NEED to show me that you're sick? No really, but what you're doing now is certainly not convincing me to believe you. You are asking me to believe that you have a genetic mutation of some sort which causes these symptoms, but is so rare that it has never been classified. Do you realize exactly what the odds are on that? This is not even something like schizophrenia which is a long standing and well documented disorder. You are saying you have something that no one has ever had before, or at least never in a developed nation. We have names and studies on conditions that affect only one in many millions of people, so if it is really genetic then either the mutation occured within the past few generations or you would be able to trace it back much further than your great uncle.
I'm a bioengineer, this type of stuff is my bread and butter and I know all about how stuff like this goes through the scientific community.
You are asking me to take a multi-billion-to-one occurence at face value (yes, that is the probability of what you claim happend, actually happening.)

Oh, and please don't go on about your opinion of me. This is an internet message board for crying out loud! You are not my coworker, my collegue, or really even an acquaintance for that matter. That's why this is not a personal attack and why I'm not worried about your reaction affecting me in any way.


EDIT: When did asking for more information become an attack?? Just send me the name of the journals

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.

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.

let's call it Rage's syndrome.

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.

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?"

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.

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.

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.

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.

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??

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.

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.

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.

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

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.