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Margi
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Re: Are there any African-Americans represented he
« Reply #25 on: Mar 10th, 2003, 10:33am »
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David, thanks for bringing this up - I think it's high time we DID do a survey again here.  We did the race question here back in the first year of ch.com, and I'm pretty sure Bernie was our only black clusterhead.  She also had a lot of other health problems, however, and I believe never actually DID get a cluster diagnosis.  I know she had head pain of some kind, but I remember talking with her on the phone and she was wondering if she really did have clusters at the time.  To my knowledge she was the only black who ever posted here with any kind of cluster symptoms - that doesn't prove anything though.  (We forget how many people just watch and never post.)
The Asian race seems to be another group that seems to have some kind of cluster immunity.  I know of two Asians with clusters but both folks are half-caucasian.
There definately ARE diseases that are race specific (rickets comes to mind) and could it be that clusters is one of them?  That leads us to the obvious question:  WHY IS THAT?  Is the hypothalmus formed differently in difference races?
It's this kind of questioning that is some day going to lead us to a cure.  Thanks for doing this, David.  
 
p.s.  I didn't think what Ted said was racist at all.  He was just stating economic facts.  Ted's got to be the most non-racist person I've ever known.
« Last Edit: Mar 10th, 2003, 10:34am by Margi » IP Logged

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Re: Are there any African-Americans represented he
« Reply #26 on: Mar 10th, 2003, 11:08am »
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on Mar 10th, 2003, 10:33am, Margi wrote:
There definately ARE diseases that are race specific (rickets comes to mind) and could it be that clusters is one of them?  That leads us to the obvious question:  WHY IS THAT?  Is the hypothalmus formed differently in difference races?
It's this kind of questioning that is some day going to lead us to a cure.

 
Let's not forget Tay-Sachs, which is predominately a Jewish disease. I personally think a lot of these diseases came down to a Genetic "Mutation" of a certain clan many, many, many years ago. Which has evolved even further either to the better or to the worse, depending on our lineage.  
 
But that's just my take on it. Thanks for putting the post back in perspective, Margi.
 
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Re: Are there any African-Americans represented he
« Reply #27 on: Mar 10th, 2003, 11:39am »
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Yes, Margi, it is a valid point, and an important question, and one that I've wondered too...  
 
To answer the question again... Ramon has clusters, and he is 1/2 black... 1/2 Russian.   Maybe he IS the only black clusterhead here... who knows.
 
Maybe.. on the cluster survey <---- there should be a question about race.  For demographic purposes only, of course.  Maybe it could be researched that way.. instead of blatently asking people.. just an idea... because race may very well play a part.. ya never know.
 
I am thinking that the lack of other ethnicities on this site probably has more to do with language barriers - for the Asian and Indian populations, for sure.  As for blacks, I dont know.  
 
And, just for the record, I do NOT think Ted is racist!!!    
 
I was simply miffed at the fact that a perfectly VALID and important thread turned into a racial debate... no matter WHO did it.. or what the intentions were, it happened.
 
Now, can we get back to the original topic of the thread??  Geeesh.  
 
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Re: Are there any African-Americans represented he
« Reply #28 on: Mar 10th, 2003, 12:04pm »
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I agree, Tina, that we need to get back to the original purpose of this post - that's why I posted what I did.
 
I wasn't saying that you were calling Ted a racist at all.  Someone else referred to his remarks as racist (I forget who now).  I just didn't agree with that - that's all.  Smiley
 
As to Ramon...he's another case in point as are my two Asian friends here.  He's only 50% black origin.  Who's to say it isn't his caucasian 50% causing the clusters? We really need to establish a control group, I guess, of folks who are of 100% origin of individual races.  
 
Also, I think your suggestion of adding a race question on the cluster survey is a good one - but no need to qualify it though.  Maybe just put check boxes for the different races - I think most folks understand why a question like that would be asked.  
 
I do (respectfully) disagree with you about the language issue though.  We each live in virtual melting pots of countries - Canada and the States - so many different races in both countries.  While English as a second language is quite common, I doubt there are THAT many folks who wouldn't start searching for cluster info in English if they needed help.
« Last Edit: Mar 10th, 2003, 12:07pm by Margi » IP Logged

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Re: Are there any African-Americans represented he
« Reply #29 on: Mar 10th, 2003, 12:40pm »
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Sorry, I did not intend to label Ted or anyone else as racist.
 
Perhaps instead of phrasing the question "Wouldn't the first line be considered a 'racist comment'?", maybe I should have asked "Isn't it possible that the first line  could be considered a 'racist comment'?"
 
Again, I did not mean to label ANYONE racist.  My apologies to Ted and anyone else who may have taken it the wrong way.
 
But back to the original question.  That has always been a question of mine (not limited to African-Americans).
 
My apologies to anyone that I may have offended and in the future I will preview my posts in a 'potentially volatile' thread such as this,
grant
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Re: Are there any African-Americans represented he
« Reply #30 on: Mar 10th, 2003, 2:19pm »
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*sigh*  
David do you have your answer... this here thread is in the running.  
 
I didn't even want to post to this.  But I understand *as a person of color* what Grant was alluding to.  No comment as to who is or is not a racist, I will not judge from a few words in this thread.  
 
HOWEVER. AS a person of color, there IS a heightened sensitivity *strictly speaking for myself at this moment*, to commentary or things that may be REGARDED as or misconstrued as being racist, or prejudiced.  That just comes from years of dealing with it, whether it has been blatant or ever-so-subtle.  So whether it was meant or not, what has been said, is said..... and I have to say, I was not comfortable.  When stating something that is a fact, as in, statistical, especially when it can be viewed as a volatile statement, you need to back it up with your resource.  Otherwise you risk being misunderstood.    
 
That's all I have to say about that subject.  Now, back to your regularly scheduled thread.
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Re: Are there any African-Americans represented he
« Reply #31 on: Mar 10th, 2003, 3:10pm »
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Patty, I don't think David's question DID get answered.  
 
The point is that we really DON'T (to our knowledge) have any full-blooded blacks OR Asians (or hispanics, or western indians - but we do have Eastern indians, right?)  that have signed up here as diagnosed clusterheads.  WHY IS THAT?  I hate to use the word 'they', but 'they' can't ALL speak another language and not have access to a computer.  I'm thinking that maybe 'they' just don't get cluster headaches!  WHY IS THAT?
 
We're throwin the baby out with the bathwater here if we let this very valid question of David's turn into any kind of racial issue at all.  
 
Patty, I'm sorry if you felt uncomfortable by what was said here.  I sure didn't mean to add to that.  I'm just trying to get back to the original point of this thread, which really is a good one.  If we can identify why some races get clusters and why some don't, we're one step closer to determining cause and, hopefully, cure, right?
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Re: Are there any African-Americans represented he
« Reply #32 on: Mar 10th, 2003, 3:45pm »
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One look at the "Where we live" page reveals hispanics (Garza's, Pachaeco's, Jesus's - them hispanics are big on Jesus and Mary).  Also lots of south americans.
 
There are even a couple of Yokoyama's and Sushi's.
 
I think CH is a genetic disease of middle class white boys who didn't nurse long enough.  I have determined that circumcision has nothing to do with CH (thanks for that info hub).
 
That's my input for today.  Now I'm off to Oakland to hunt for clusterheads of minority persuasion.
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Re: Are there any African-Americans represented he
« Reply #33 on: Mar 10th, 2003, 3:58pm »
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on Mar 10th, 2003, 3:10pm, Margi wrote:
Patty, I don't think David's question DID get answered.  
 
The point is that we really DON'T (to our knowledge) have any full-blooded blacks OR Asians (or hispanics, or western indians - but we do have Eastern indians, right?)  that have signed up here as diagnosed clusterheads.  WHY IS THAT?  I hate to use the word 'they', but 'they' can't ALL speak another language and not have access to a computer.  I'm thinking that maybe 'they' just don't get cluster headaches!  WHY IS THAT?
 
We're throwin the baby out with the bathwater here if we let this very valid question of David's turn into any kind of racial issue at all.  
 
Patty, I'm sorry if you felt uncomfortable by what was said here.  I sure didn't mean to add to that.  I'm just trying to get back to the original point of this thread, which really is a good one.  If we can identify why some races get clusters and why some don't, we're one step closer to determining cause and, hopefully, cure, right?  

 
Margi-  
I appreciate what you are saying - I have wondered myself about the demographics of clusterheads.  I think David has more than a valid question.  I wasn't aiming at throwing out the baby with the bathwater... that is not what I was trying to do.  It possibly IS an important component of who makes up the clusterhead population.  
 
My point was to give some insight from my perspective.  If there are minorities on this board reading this, I suspect they may have similar feelings, or at the minimum, be ambivalent about how to take some of the commentary.  
 
I do think it is important to take into account all possibilities, from all angles.  After all, whether you support a child, a husband, a friend, etc., we don't want to see them in pain.  We don't want them to suffer.  To find a cure - that would be a blessing.  
 
Hope this helps to clarify.
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Re: Are there any African-Americans represented he
« Reply #34 on: Mar 10th, 2003, 4:05pm »
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This is a really interesting thread...
 
Margi pretty much already articulated my feelings on the subject.  I don't care if someone is white, black, red, or purple BUT I do think this would be interesting to look into from the perspective of "who gets clusters?".    It may just be that clusters are predominent in white males (looks like it in this thread).  And like Margi said there are several diseases out there that target specific racial groups...sickle cell anemia???  Also, I have read several times that black men are at higher risk for high blood pressure & high cholesterol.  No idea why, though!
 
Thanks for starting this conversation David, I think it deserves more exploration.
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Re: Are there any African-Americans represented he
« Reply #35 on: Mar 10th, 2003, 4:36pm »
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I think a really good place to start the research on this subject would be to ask our neuros if they have any patients who are non-caucasian.  Might get some wheels turning if that answer is no.
 
And, Virginia - I'm betting that the purple people don't get clusters either, but, that's just my opinion.  Wink
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Re: Are there any African-Americans represented he
« Reply #36 on: Mar 10th, 2003, 5:08pm »
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 Geez you guys....now I gotta open up my big mouth again and you all know what fun that has been in the past....
  First I read all of this thread so far and I don't see one hint of Racism.....course I don't go out of my way to look for it either. Bottom line on racism is that there is no racism. I live in an area where I've heard racism screamed more than anywhere else I have ever lived, and I am sick of it. People create thier own problems when they go around tuned in to every statement or whisper that could be interpreted as a racist remark, and DO.
  I personally don't have time to waste digging up racism everywhere I go, life is too short. Personally, if you have that kind of time then either you are wasting it or have too much. Besisdes why would you want to create more obsticles in your life?  
  I have experienced racism on ALL levels, because I was never white enough for whites nor black enough for blacks, so where do I fit in? So forget the technological and judicial demographics and get on with the medical stuff, the rest is just symantics.
 
  CH....= sucks
  CH ..a race specific disorder? = unknown
  tring to figure out where you fit in with CH in a racist world? = Priceless
  
  for everything else.... theres work, family, and living screw mastercard.
 
Ramon
 
P.S.  noticed that I posted this under woobies name? ........thats what I get for opening my fat mouth.
« Last Edit: Mar 10th, 2003, 5:10pm by Woobie » IP Logged
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Re: Are there any African-Americans represented he
« Reply #37 on: Mar 10th, 2003, 5:28pm »
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on Mar 10th, 2003, 3:58pm, Peppermint wrote:

 
If there are minorities on this board reading this, I suspect they may have similar feelings, or at the minimum, be ambivalent about how to take some of the commentary.  
 
Hope this helps to clarify.

 
Exactly my point...well, a roundabout way of getting to it, anyways....we've probably all been guilty of wording the request wrong, but ARE there any full blooded Black, Hispanic or asian sufferers here?  All we're asking and offering here is an open invitation for you to stand up and be counted.  It's the only way we can learn about this condition and to rule OUT hypotheses that could end up leading us to false conclusions.  Please let us know if you are of any of these racial origins.
 
Again, Patty, I'm sorry that you took offense (if you did) by my participation in this thread.  Certainly not my intention.  I do see your point, though - I wasn't trying to disregard that at all - just trying to steer conversation back to the question at hand....
 
and, while I'm up here on my soapbox, David - you mentioned that you personally know this to be false (that clusters don't attack blacks)....how DO you know that?    
« Last Edit: Mar 10th, 2003, 5:30pm by Margi » IP Logged

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Re: Are there any African-Americans represented he
« Reply #38 on: Mar 10th, 2003, 5:30pm »
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 Since we are sorta on the topic of racism ....sorta. I have a couple more comments. I don't think that lack of technology, education,  has anything to do with the lack of "African-Americans" on this site.
  I believe actually that it lies more with the lack of knowledge by physicians and patients alike that show the true nature of the problem. Keeping along the ECONOMICS aspect of this topic, fewer blacks have health insurance than most whites, as well as generally being poorer. Hence that less blacks may be seeing doctors that are not in thier own practices, and seeing physicians that are state funded, in turn, creating a gap in health care situations.
 State medical funding often doesn't allow expensive testing, and/or speciallists when the diagnosis isn't terminal or commonly acknowledged by the medical community. And we won't even try to touch the pharmaceutical points to this. Therefore less blacks knowing about CH and  even fewer seeking help for a condition they don't even know they have.
  Makes sense to me anyway. Oh and just for the record blacks are now out-numbered in America by hispanics. We are an actuall minority again......wooohoooo! wait a minute ....did I just say that?
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Re: Are there any African-Americans represented he
« Reply #39 on: Mar 10th, 2003, 5:37pm »
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on Mar 10th, 2003, 5:28pm, Margi wrote:

 
and, while I'm up here on my soapbox,

 
Get off there!  You're gonna fall and get hurt, Margo!   ;D
 
 
 
 
 
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Re: Are there any African-Americans represented he
« Reply #40 on: Mar 10th, 2003, 8:45pm »
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on Mar 10th, 2003, 5:28pm, Margi wrote:

 
Exactly my point...well, a roundabout way of getting to it, anyways....we've probably all been guilty of wording the request wrong, but ARE there any full blooded Black, Hispanic or asian sufferers here?  All we're asking and offering here is an open invitation for you to stand up and be counted.  It's the only way we can learn about this condition and to rule OUT hypotheses that could end up leading us to false conclusions.  Please let us know if you are of any of these racial origins.
 
Again, Patty, I'm sorry that you took offense (if you did) by my participation in this thread.  Certainly not my intention.  I do see your point, though - I wasn't trying to disregard that at all - just trying to steer conversation back to the question at hand....
 
and, while I'm up here on my soapbox, David - you mentioned that you personally know this to be false (that clusters don't attack blacks)....how DO you know that?    

 
Ok Margi... maybe roundabout, or not efficiently stated... however, as far as saying the same things... that's Exactly my point.  
 
No offense taken.  
 
Wish I'd followed my instincts.
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Re: Are there any African-Americans represented he
« Reply #41 on: Mar 10th, 2003, 9:26pm »
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Let's recap. The question was asked why blacks aren't at ch.com a lot and how can we reach out. I state a FACT (sorry patty, but it's a fact, whether it offends you or not) as to why, but admittedly I didn't give an answer to reaching out. For answering the question by stating that fact I'm insensitive and a racist. It's a FUCKING fact. There's no reason to cushion it. There's no way to cushion it, like some requested. And if you want attributions, do your own homework. Try the Southern Poverty Law Center, where I get some of my hard copy and e-info from. Try NPR or the Times for stories on it.
 Ramon's economic theory was a damn good one that I hadn't thought of. And it's probably the largest reason few blacks come around here. But I see from how some of you look to be a cause without a rebel, I'd have probably been branded the grand dragon of the KKK had I said it.  Roll Eyes
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Re: Are there any African-Americans represented he
« Reply #42 on: Mar 11th, 2003, 2:29pm »
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2late, believe me I know where you are coming from but I know a lot of blacks who are not African-American. I also know (my neurologist) who were born in Africa but are white. Just a point to ponder. I'm fucking fed up with the the PC bullshit to.
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Re: Are there any African-Americans represented he
« Reply #43 on: Mar 11th, 2003, 7:48pm »
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Wow,
 
This question was asked of me by my ex-girlfriend (still my best friend, we just can’t live together). She is a “Chocolate” lady, born in CA.  
 
It got me wondering, like Ted, if economic disparity was causing a lack of representation, or if the black community is immune to this disease.  
 
If the answer is “economic disparity”, I thought that since we are trying to “get the word out to everyone who suffers from CH’s”, perhaps there was another way to reach people who don’t have internet access. It was just a thought.
 
As far as the anger directed towards the supposedly Political Correctness of the term “African-Americans” as opposed to “Blacks”, I think you will find that neither term really fits. I have had discussions with the publishers of both, Ebony and JET magazines (they will be the first to tell you that they do not speak for all African-Americans), they prefer the term “African-Americans”, however they accept that the term "Blacks", is in common usage. Seems to me like they are searching for a term that will distance themselves from the “Black Power” image, symbolized by the raised fist at the Olympics. That image does not speak to their pride in being American. It’s their call, not mine.
 
As Father Guido Sarducci said about the Pope and contraception—“You no playa da game, you no makea da rules”.
 
David J.
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Re: Are there any African-Americans represented he
« Reply #44 on: Mar 11th, 2003, 10:52pm »
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Quote:
Wow,
 
This question was asked of me by my ex-girlfriend (still my best friend, we just can’t live together). She is a “Chocolate” lady, born in CA.  
 
It got me wondering, like Ted, if economic disparity was causing a lack of representation, or if the black community is immune to this disease.  
 
If the answer is “economic disparity”, I thought that since we are trying to “get the word out to everyone who suffers from CH’s”, perhaps there was another way to reach people who don’t have internet access. It was just a thought.

 
OK... if I understand the point of your original post... it was about getting the CH message out to those who are economically disadvantaged, who perhaps do not have Internet access. If so, I think that is a great idea.
 
But economic disparity is not unique to African-Americans... there are lots of people who may not have Internet access... poor African-Americans, poor families  in the Appalachian Mountains, the Amish (most who don't even have electricity), homeless people, etc...
 
A good place to start would be flyers or brochures in hospital ERs, free clinics, and doctors and neurologists offices. Word of mouth advertising is also good... I have managed to meet a couple of clusterheads in my city that way.
 
Many people who are poor who cannot afford medical insurance or a computer or Internet access still are eligible for Medicare, Medicaid, and other services... and do visit the same doctors and ERs as those of us who are more fortunate.
 
The CH sufferers who are probably hardest to reach are those whose religions  bar treatment using drugs because "if you have cluster headaches, it is God's will" ??? Unfortunately, I don't see a way to help them.
« Last Edit: Mar 11th, 2003, 10:55pm by Frank » IP Logged
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Re: Are there any African-Americans represented he
« Reply #45 on: Mar 12th, 2003, 5:33am »
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Everybody,
 
No one in the world is doing a comprehensive history of Cluster Headache sufferers, comparable to this site.
 
We have to do our own research. Hell, there are medical articles quoting our “Cluster Survey”—we ARE the source.
 
If there is a group of people out there, that don’t get Cluster Headaches, we should want to know that information. We have to be aware of what isn’t there, as much as we are with what is there.
 
Remember, our goal is to find a cure.
 
David J.
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Re: Are there any African-Americans represented he
« Reply #46 on: Mar 12th, 2003, 12:50pm »
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on Mar 10th, 2003, 9:26pm, Ted wrote:
... I'd have probably been branded the grand dragon of the KKK had I said it.  Roll Eyes

 
I hate to pop this thread back up to the top.  
 
But I just wanted to say to you Ted, I apologize if that's the way you took it.  I didn't mean to offend you but looks like I have done just that.  I consider you a friend, but after this, its your call.
 
I just want to say it right here where it began.  
 
I'll go away now.
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FYI - I am NOT a clusterhead.
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Re: Are there any African-Americans represented he
« Reply #47 on: Mar 15th, 2003, 12:20pm »
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Call me black, call me white, call me anything you like, just dont call me late for the party ;D (Steelheart)
 
............................jonny Cheesy
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jimash
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Re: Are there any African-Americans represented he
« Reply #48 on: Mar 15th, 2003, 12:39pm »
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There are plenty of Black people with CH (Kareem Abdul Jabbar for one)
And there are plenty of black people with computers and know how to use them.
(donning flame retardant suit)
 The Black culture and community deals with problems like this in a different way.
They are there at the doctors and ER's.
If they can afford it. If they can't afford it they are probably skeptical of getting any satisfaction or relief from a forum such as this.
Black people also don't report very many UFO sightings.
Generally they are too busy just trying to get along.
Jim
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Re: Are there any African-Americans represented he
« Reply #49 on: Mar 15th, 2003, 7:30pm »
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Jim,
Thats a very interesting statement you made ( plenty of black people suffer from C.H. ) where did you hear this ?  Or are you assuming that this is the case ?
 
 BTW = ( Kareem Abdul Jabbar ) suffer's from that other disorder that starts with an "M" and ends with an "E" and sometime's with an "S" ( depending on,how you phrase it Wink ). Let me know where you got this imf.
 
 
 Alot differant than "CLUSTERHEADACHE'S"
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
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