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shellshell

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Loved one DX
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Scott
I've only been a member for a couple of months now on this forum and it appears that there are more and more new members each day that express their concern that they've either been diagnosed with ALS, in the process of being diagnosed or have a family member that is touched by ALS.

When my dad was first diagnosed in February 2007 I did a ton of research on ALS and every thing I kept reading stated that ALS was a "rare" disease. I don't know about you all, but it doesn't seem to be so "rare" to me. It appears that there are many more people being diagnosed everyday with this disease. Makes you wonder what the root cause/causes are of this disease. :confused:

My dad was in Vietnam and was exposed to Agent Orange (which he has skin cancer's from) and I sometimes wonder if that might be a cause of his ALS, I know Agent Orange causes several neurological disorders but they haven't proven that ALS is one of them, I belive it's just a matter of time before they do. :idea:

I just wish there was more research geared towards ALS, it breaks my heart that wonderful people, like all of you and my daddy are dealing with a disease that doesn't appear to get the attention towards research that it deserves.

I only hope oneday that there is a cure for this "rare" disease...

Much Love,
Michelle :)

Oh P.S. the Paul Dunn Golf Tournament and the Silent Auction is this weekend in Little Rock Arkansas, all of the proceeds will go to ALS research, wish us luck...my family will be there volunteering for the cause and we are so excited about it.
 
Hi Michelle,

I once heard that ALS occurs as often as MS, but because PALS tend to die relatively quickly, the number of people living with the disease at any given time is much lower.

Mike
 
Hi Michelle. You bring up a guestion that has been rattling around in my mind. I wonder if the incidence of MNd is realy on the rise or if foks are ust able to connect better due to the internet and therefore it seems like we are seeing more instances? Cindy
 
Hi
It is true that ALS is as common an incidence as MS ,but the prevalence is 10X less ,because life expectancy is short. The prevalence of ALS is 7 per 100,000 as compared to 70-100 per 100,000 for MS. So overall , ALS is still a rare disease in general society. An exclusive club ,but most of us would prefer not to have membership!
Best Wishes
Jean
 
I too agree Jean that I wish no one had a membership to that club...Thank you all that replied...:lol:

Michelle
 
The number of cases on any given day in Canada has stayed in the 2500 to 3000 range since my diagnosed in 2003. That's in a population of roughly 31 million.
AL.
 
Jean and Mike hit it on the head. The number of people who have ALS at a given time is small but so are the number of people who are actually dying in car accidents at any given moment but neither is a rare way to die. Doing some estimates of the number of people who have ALS in the USA and the number of people who die from it, I estimate that the chances of anyone getting ALS in their lifetime is about 1 in 450 to 500. I would call that uncommon but not rare.
 
The ALS Society says that 2 or 3 people in Canada die every day from ALS. MADD says that every day in Canada 2 or 3 people are killed by drunk drivers. When you think about that and the variation in awareness it makes you wonder. Just a thought. Not a debating point.
AL.
 
i am like the rest of the folks on here, i wish nobody in the world had the crappy disease, but i didn't think there was as many people affected with it. Not till i got on here did i realize their r more people with als. I hope your dad does ok. You and your family are in my thoughts and prayers.

Tonya
 
Hi there

Hi, I just read recently that every 90 minutes someone is diagnosed with ALS. Seems to me we hear more and more of people with ALS. I think too there wasn't enough awareness! My Best to all, Beebe
 
Beebe said:
Hi, I just read recently that every 90 minutes someone is diagnosed with ALS. Seems to me we hear more and more of people with ALS. I think too there wasn't enough awareness! My Best to all, Beebe
That figure sounds like it is just for the USA. Since the USA has only 4.5% of the world's population, imagine what it is worldwide.
 
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