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Old 03-24-2008, 08:45 PM   #1 (permalink)
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Default Is there an increase in als cases?

I asked my husbands respitory therepist if she had alot of als cases and she said yes and a lot more in their 30s. I've met several people who have relatives or friends with als. It never use to be this common. Has anyone heard why? Judy

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Old 03-24-2008, 09:27 PM   #2 (permalink)
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I worked in medical records at the county hospital for 13yrs and never heard about als untill i was diagnosed. with it 2yrs ago, when i had all the symptoms. i wish i had known about this site 5yrs ago when i started having problems.
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Old 03-24-2008, 11:24 PM   #3 (permalink)
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Everyone on here has different opinion. Mine is "no" it is not as rare as the statistics or whatever you want to call it reports in my opinion. A lot of people die before proper diagnosis so, therefore, I don't how they can call it rare. I live in West Virginia and it is unreal the cases of ALS/MND there are. I wish we all knew why, then we would have a cure.
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Old 03-24-2008, 11:26 PM   #4 (permalink)
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I don't think there are more cases but more knowledge and awareness.
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Old 03-26-2008, 10:47 PM   #5 (permalink)
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It is hard to know really. A little like the autism debate. The stats for your child having autism now are very alarming - quoted here in NY as 1/150 kids. Yet the medical profession maintain that there is still no evidence of an increase as such but there is greater awareness and therefore more cases diagnosed.
Personally, I think it is a combination of the two and the same probably applies to ALS. I think the world is simply more toxic than it used to be and therefore the prevalence of neurological disorders is greater - that combined with better diagnostic tools means that the numbers certainly seem higher.
I wonder often about clusters too. I have been on a lot of message boards and read a lot about ALS and something that struck me is that there seem to be many many cases of ALS in NC and PA. Anyone else noticed that? No idea why but someone ought to be looking into this stuff.
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Old 03-27-2008, 08:02 AM   #6 (permalink)
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If we assume that the 2 cases per 100,000 people is a valid number then the number of cases would have to increase. The population in the U.S. is increasing by 1 person every 13 seconds. For the sake of argument let's also say that the 5,000 cases per year in the U.S. was correct as of January 1, 2005.

31,536,000 seconds in a year * 3 years = 94,608,000 seconds

94,608,000 seconds / 13 seconds per person gained = about 7,000,000 people (increase in U.S. population in last 3 years)

7,000,000 people / 50,000 (2 in every 100,000) = 140 additional cases of ALS in the last 3 years in the U.S.

Meaning that as of Jan 2008 there would have been 5140 instead of 5000. Given the fact that there is no centralized tracking and even the ALSA doesn't touch everyone diagnosed you'd never see the change.
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Old 03-28-2008, 02:20 PM   #7 (permalink)
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Two other points to this question:

Number one: there might be an improvement of the statistics in regards to tracking ALS.

Number two (to expand on Jeff's point): not only is the population going up but our population is aging too . . . that is . . . there are more older people now, and ALS does (on average), affect older people . . . that is . . . average age of onset is around 55 years of age (average range of 40 to 70).
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Old 03-31-2008, 09:43 AM   #8 (permalink)
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I don't know if there is an increase, but will tell you that my realtor is currently representing 2 families, in Thousand Oaks, CA, mine being one of them, that are selling their homes because the husband has ALS. What are the odds of that?
Andrea, wife of PALS Jim.
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Old 03-31-2008, 09:55 AM   #9 (permalink)
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Hi Judy! I didn't know anything about Als until my son was diagnosed'ed. I knew who Lou Gherig was, and what caused his death, but I did not know the severity of this disease until it hit home. Then a lot of Als cases popped up from left and right. I don't know what is the cause, but it is alarming. We definitely need a cure.

Irma
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Old 03-31-2008, 12:58 PM   #10 (permalink)
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I agree - I knew very little about the disease until my husband was diagnosed. I can't believe I was so ignorant of such a devastating illness! But this seems to be the norm - even the medical profession knows very little! I wonder sometimes if the increase has anything to do with the chemicals more prevalent in our society? My husband was a firefighter, and it seems to be an occupational disease as I've heard of so many firefighters afflicted with ALS. It's just so sad that this disease has been around for so long, and there are very little strides made towards treatment, or a cure. We need more recognition for ALS - the squeaky wheel does get the grease! If everyone was to witness what an ALS patient must go through, perhaps more research would be done - I tell everyone just how terrible this disease is - and fundraise as much as I can. No one should have to go through this!
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