Prevalence of ALS

[ptich]

When one reads about ALS, the quoted number is always 1 per 100000 per year. But I personally knew 3 folks in the last 14 years who got ALS. Certainly does not sound like 1/100000. Has it become more prevalent recently ?

[rknt50a]

Some thoughts on why the numbers are so troublesome are at

www.alscounts.com

[Al]

As per the recent article in Toronto the prevalence ov ALS in firefighters in Ontario is 10 times the national average. They are counting. Is any other group?
AL.

[rknt50a]

Tuscaloosa, Alabama has a suspected cluster and has a death cert project going on.

See August 14 entry at
http://www.alscounts.com/slog.html

[mamaoftwo]

There was a study done by the Head Prof of Neurology at Col. Presb investigating the link between having always been slim and athletic and getting ALS. Apparently the link is not proven but there is definitely some correlation. In the patient questionnaire at the hospital, it asks "have you always been slim?" and "were you involved in varsity sports?". They know something is up, they're just trying to figure it out. It is also becoming more common in younger people so perhaps the avge onset age of 55yrs needs to be revised now. A quick look at these boards alone shows a significant number of people in their 30s and 40s and even some much younger.

[rknt50a]

You can't connect the dots if you're not even collecting the dots.

I hope and pray that someone will get a worldwide registry established soon so that there is a statistically viable pool of clues! Extrapolating from small studies just doesn't cut the mustard with this complicated and wicked disease.

[davis08]

Their are about 1 hundred thous. people in my town.
I no four people who have it in our town. Plus I am sure
their are more that I dont no.

Davis

[ZenArcher]

Al, the Veterans Association in the US is counting. I'm sure you've seen the writings showing the military service makes you twice as likely to develop ALS and it has shown to manifest at a younger age.

[CindyM]

I know 3 people who have been to 3 different funerals for PALS within the last year. The PALS all came from towns near mine. Seems like something is up...Cindy

[John1]

When one reads about ALS, the quoted number is always 1 per 100000 per year. But I personally knew 3 folks in the last 14 years who got ALS. Certainly does not sound like 1/100000. Has it become more prevalent recently ?
I find incidence and prevalence figures for ALS to be not very informative. I prefer the death rate from ALS. According to Jeff Rothstein at the Packard Center, a man has a 1 in 800 chances of contracting (and dieing) from ALS. According to my calculations using the most recent US mortality figures from all causes and assuming that 6000 US residents die each year from ALS, then the odds of getting ALS are about 1 in 500. So it's not surprising that we all know a few to several people who have or had ALS.

John

[Omar]

Hey Mamaoftwo,

I find it interesting the study you are talking about, cause I have always been slim and athletic, so does another Pals I know and I am curious to know if other Pals have always been slim and athletic.

Omar

[ptich]

Certainly not. Of the 3 PALS I new personally none was athletic, and only 1 was really slim.

[mamaoftwo]

Hi Omar - I am, as yet, undiagnosed but I could easily answer 'yes' to both those quesions. While i never did varsity sport as such, I have always been very sporty/outdoorsy as it were - mountain climbing, horse riding, running, scuba, ski-ing, tennis etc. So who knows. I was certainly interested to read about it. The neuro working on the study is Dr Lewis Roland, previously Head of the Lou and Eleanor Gehrig clinic at Col. presb in NYC.

[jean]

Going back to the prevalence of ALS, it is easy to confuse the incidence(which is 1-2 per 100,000) with the prevalence( which is 7 per100,000). The prevalence relates to the number of people living with ALS at any moment in time , whilst the incidence relates to the frequency with which the disease occurs. The incidence of ALS in the population is actually as the same as for Multiple Sclerosis , but because the life expectancy between the conditions is so different, the prevalence of MS is about 10x that of ALS.
I'm sure that the prevalence of ALS in the community will be increasing , because of Bi- pap and PEG feeding , which allows PALS to live longer. No doubt the figures will be updated as and when the information is collected. So if prevalence seems to be increasing , it will be a good sign that folks are living longer . If the incidence increases,then that would mean that more cases are ocurring, which could be rather depressing . 1-2/100,000 is too frequent already, so I hope only the prevalence and not the incidence is on the up! If and when a really effective treatment is developed,ALS prevalence might get up to match the prevalence of MS and then we would really know that things were going in the right direction.:-D
Jean

[John1]

Jean,

Thanks for one of the clearest explanations of the difference between incidence and prevalence that I've seen. Just a note on prevalence, if you accept the figure of 30,000 as the best estimate of Americans living with ALS and use a current population figure of 302,800,000 from the US Census Bureau( http://www.census.gov/main/www/popclock.html ), the actual prevalence is about 10 per 100,000 so maybe we're already moving in the direction of longer longevity for today's PALS.

Here's the algorithm I used:
10*(302,800,000/100,000)

If you use 7 for the prevalence, you would have a PALS population of only 21,000.

John

[jean]

John
Thanks for that. Glad to help with the definitions. I think the prevalence is increasing which is good news. Still have a way to go before ALS catches up with MS, but here's hoping!
Jean

[guwainengle]

I wish we could get as much research dollars towrd ALS and other MND comparable with that which goes toward MS research. I think if this would happen-- we may be closer to a cure or a way to slow the progression down. Probably the statistics would change too.

G

[quadbliss]

This may seem like a hard way to do it, but if more people chose life extending measures, and there were more of us "living" with ALS, the drug companies would have more incentives to do research. There would also be more ALS "victims" visible in the community.

Mike

[joelc]

I totally agree with Mike.

I keep reading how there are as many PALS diagnosed each year as MS but we die too soon so there are less of us living at any given time as compared to MS.

So......like Mike said....let's choose to live by getting a PEG and VENT when needed.

[bucky]

My broter-in-law lives in a small community. Population is20,000. He informed me on his last visit that he knew of three people who have been diagnosed with A.L.S. in his community.Just this year. That certainly challenges the 1 in 100000 statement.

[ltr]

My community has a population of 30,000 and there are 2 PALS that I know of this year, both recently deceased. I wish there was a way to find out if there is more, but there is no MDA, clinics or support groups here.

[MtPockets]

Just saw this message about a National Registry. It's about time.

The ALS Association secured a tremendous victory when the House Energy and Commerce Committee, Subcommittee on Health, unanimously passed the ALS Registry Act on July 19. The Subcommittee’s action is one of the most important steps in the legislative process and one that demonstrates that the bill, which would establish a national ALS registry, can pass Congress this year. Since the ALS Registry Act was introduced in May, more than 265 Members of the House and over 40 Senators have signed on as cosponsors an incredible show of support in such a short period of time!
The ALS Association would like to thank advocates for their outreach to Congress over the past several months. It is clear that Congress is listening. And that’s why it is critical that everyone in the ALS community continues to actively participate in The Association’s advocacy efforts.



God Bless ALL
Capt AL

[guwainengle]

I met with my local Neuro yesterday-- he said so far this year he has had 3 people go on to be tested for ALS. All 3 were confirmed. My community is 50,000. That would make the number 6/100,000 so far this year just with my group-- There are 4 Neuro groups in Altoona. I am sure there are more. Seems like the ratio is much higher.

G