ALS Epidemic?

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Txgirl

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PALS
Diagnosis
04/2013
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It seems everywhere I turn there is a new diagnosis of ALS. I have had so many people including friends & family members that know or have known someone with ALS.

I saw another football player on the news tonight that has ALS. My son came home this evening & told me there is a guy in his class that was talking about his mom having ALS.

One of my close friends died of ALS in 2002. I do not believe ALS is that rare of a disease anymore.

I have read that there are 20,000-30,000 people with ALS in the US. I just believe there are MANY more cases than that. To me it looks like an epidemic!
 
well maybe not an epidemic so don't panic yet :razz:

we were watching something about ALS last night that was given to us by our coordinator and the neuro talking said that ALS appears to be on the rise however there can be some factors involved such as:

Better diagnostic processes in place now
Better data going on to death certificates
Raised awareness

He also made the great point that if you are not aware of something you tend not to 'see' it, but once you become aware you feel like you see it everywhere.

So that can be why you suddenly pick up on every person you hear of with ALS now, because not it is something that is so close to your own situation.

Before your own personal contact with ALS you may hear of someone a friend knows dying of ALS but it doesn't register like it does now.

He said it nicely - before you have a baby you hardly notice prams around, then you have a baby and they seem to be everywhere!

He did however also say clearly - ALS is not a rare disease.

If anyone wants more detail, feel free to PM me :)
 
It does seem that I hear about it more and more. I don't think it all so rare either.
 
Most people I speak to never heard of Lou Gherig....ALS is not in their vocabulary.
 
My panic was in April when I was told that I have ALS :-|

I am talking about actual real cases.

My friend died of ALS
My SIL's friend died of ALS
My MIL's preacher died of ALS
My hairdresser knows a guy that has ALS
My friend/neighbor knows 2 people that currently has ALS, me & a guy she worked with.
My son has a class a guy and his mother has ALS.
Think about it...2 people in a classroom of 25 people & 2 of them have parents with ALS.
 
sure, but then there may be 10 other classes there with no parents with ALS ... stats have to be looked at with a big picture.

and of course, we all know that 87.459 of all statistics are made up on the spot ... ha!

I do see though that you have a lot of contact with ALS. I never knew anyone with it before my husband, and never heard anyone say anything about the disease.

Now, probably half the people I know actually know someone who has it or knew someone. But that was always the case, I just never knew of it until I made contact with the disease.

Does anyone happen to know stats on incidence of ALS in say the past 10 or 20 years? Of course rising incidence doesn't mean that ALS is becoming more common. That's where it's tricky as better diagnosis and growing populations have to be taken into account too.
 
The young man who raised the 12th Man flag at the Seahawks game tonight is a former NFL player with ALS. I think awareness is growing; a good thing.
 
Many of the Hospice nurses/CNA that deal with my wife have NEVER had a patient who had ALS.

I would say over 50% of people I talk to have either never heard of ALS or know nothing about the disease.
 
most people I tell have heard of it, but don't really know what it is. I always use ALS, and then reference Stephen Hawking. they know him--and they get it when I say his name.

It is true though, if you are aware of something (or Hyperaware like us) then you notice it more.
 
Okay, my respiratory therapist just left. She told my husband & I that she has 5 members of one family on service and they all have been diagnosed with ALS in the past 2 years. She said they are brother, sisters & cousins and have never had ALS in their family before.

That right there speaks volumes to me. I really do not need statistics when I have common sense and can clearly see what is before me.
 
Almost everyone I talk to since my diagnosis, personally knows someone who had/has ALS or knows of someone who had/has ALS. I was surprised.
 
I have heard of documented ALS clusters...maybe that is what you are experiencing. and that opens up a whole nother discussion of what causes ALS...
 
THERE ARE CLUSTERS OF ALS. one possible reason, cyanobacteria in water with blue-green algae. drinking supply or recreational read reports on institute of ethno medicine.com worldwide if you find a cluster of als you will find cyanobacteria, if you find cyanobacteria you will find a cluster of als
 
that 5 members of a family is familial ALS and not quite an epidemic, it's FALS.

Now it can skip generations, they don't know why some people with the genetics for FALS don't develop the disease and some do. But it may be found that actually a couple of generations back people in the family were diagnosed with a 'wasting disease' of no name, or thought to have a stroke. Many people don't know anything much about the health status of family members more than 2 generations back.

The seminar I recently watched had a researcher talk and he feels that it is possible, since they know so little, that a sporadic case can be the first in what becomes a FALS down the line. It doesn't sound right except that he is saying POSSIBLY there is a gene that goes wrong in that person, and well before ALS shows, and then that gene fault passes down.

I just think that you need to be careful using words like epidemic. But it does seem that ALS is not as rare as it was once thought to be.
 
During my years here I have noticed pals more in the southern states of the usa.
A lot of bulbar pals in texas.
And also many pals in Ontario Canada.
Here in uk its hard to tell,london seems a hotspot also north of England where i'm from.
Just my observations.
 
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