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Wisesage716

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Learn about ALS
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New Orleans
Whenever I look at these forums I see more people from the northern states. Is this just coincidence or are there really more pals up there as opposed to the south?
 
Good question, Wisesage. However, I don’t thin ALS descriminates between north, south, red, blue, white, brown, etc. it may be that population density is higher to the north or that people living further to the north are more likely to frequent online forums.
 
Membership and posting here in no way reflects the distribution of ALS.
 
ALS is an equal opportunity disease. I was on clinic in Toronto today and the waiting room looked like the United Nations complete with turbans. Perhaps we are just friendlier up in the frozen North.:wink:
 
Wisesage, I noticed the same thing a while back. There are several members from Florida but they are probably from up North anyway. The big missing ones are NC, SC, GA, MISS, LA, TX (for size and population) and NM. Arizona is like Florida.

Maybe it's those long cold winters up in the Northern states where summer is from 4th of July to Labor Day. :)
 
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Hey for some reason I wasn't on the map but I clearly remember when Pete made this and I put myself there! Fixed now :)

It makes it looks like there are only like a few people with ALS in Australia when there are of course thousands ...
 
Thanks to all that answered I guess I ask these questions because I got a cousin that's from down here and his family moved to Rochester when he was a baby. He moved to upstate NY. He has been living there for 35 years as he is 37 years old and he was just diagnosed with als. While I'm not worried about fals but I just sparked my curiosity as to why someone so young would get something so rare. He has told me about how there are so many more clinics up there with clinical trials. We tried to convince him to come home as his wife left him. He says there is little support in the south because it is less common... After that I started looking up forums for pals and what he says makes sense. Even in Texas where the population is almost equal to new York there are fewer clinics. I suppose it's a supply and demand thing. I just can't help but wonder if living in the northern states has something to do with it.
 
I don’t believe it is correct it is less common to have ALS in the South. I do think we have better resources up here but that is more a function of the prestigious academic centers attracting young specialists. They want to have the resources and learn from their seniors. It becomes self perpetuating. I know we have had members from your general area speak of the difficulty in accessing a clinic. The waiting lists are long which seems to indicate plenty of patients and too few specialists

One of the researchers at my clinic was actually speaking of her concern that studies are often East Coast centric

I am sorry for your cousin. It is a difficult situation
 
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I live in Texas , and unfortunately there are many PALS at the Dallas VA , and a support group I attend.The beast lives here too.
 
Thanks for that link it was definitely interesting
 
I have been similarly curious as 2 other pals have lived next door to my pals. 3 people on one street within 5 years seems awfully high considering less than 5K/year dx with it.

I have found a research study out of Dartmouth studying the connection between cyanobacteria and ALS - this caught my attention because of the blue-green algae problems that exist in NW Ohio. So I would say the disease is not geographically selective, however, it is worth considering whether higher exposure to blue-green algae exists in some areas than others.

Btw - my parents lived 18 years on a pond with a fountain in NW Ohio -- as did at least one of the other 2 pals on the street.
 
Open that link that Nikki posted I was shocked. The first thing that needs to happen is that this needs to be a registered disease. What I mean is doctors are not required to report a case of als for statistical purposes. Any info obtained is done through insurance companies and VA. Something tells me that way more than 6000 people are diagnosed with this disease each year but it's just not reported. In that report I read I was alarmed at how many people lived by the coast and by bodies of water. I'll use Maine as an example. Maine has roughly 1.3 million people living in it yet there are about 120 people with als. That's almost 10 per 100000 which is more than twice the national statistic. (I'm not picking on Maine). I've been living in New Orleans all my life and my cousin is the first person I heard of with this disease (besides famous people like Gleason and Steven Hawking) and coincidentally he lives around people also with this disease. There are 25 million people in Texas with around 300 cases. That's twice the amount of cases as Maine with 20 times the amount of people. Giving Texas a more national statistic of 2.5 per 100000 people. I know nobody wants to think it's their home and city that they love that makes them Ill. But maybe it is. I can even look at my own state of Louisiana. It appears there are clusters around areas we refer to as river parishes. Not surprising after I read the article. Further studies are needed on clusters.
 
You just can't become an overnight expert researcher with one web link.

When my Chris was ill there were 4 people in our small town with ALS - OMG cluster!!!!

4 years later, we haven't had anyone with ALS in this town for at least 18 months.

14 years ago in another small town in this large rural area there was a cluster, and there hasn't been a case there for at least 10 years.

I know because I work voluntarily with our ALS association and so I know where the cases are.

So you can jump up and down about some data that you suddenly find at some given point in time, but you are not seeing the big picture.

There are many researchers working really hard. Most of us believe ALS is a group of different diseases and may have different causes.

I don't mean to sound like a Debbie downer, but you don't have ALS and we are living with it daily - you can play detective or researcher, but I think this thread has run its course really as it is supposed to be for you to ask if you have ALS and you obviously don't.
 
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