ALS in neighborhood

[Kjuby]

I found out today that a third person I know passed of ALS. My mother passed in 2010 our neighbor passed a few years before her and now a friend of my brother when they were growing up. All in the same neighborhood. Is there some site I can go to that might be interested in looking into this? These 3 are who I know of in the same neighborhood there could be more. Isn't it strange? Java anyone else experienced this?

 

[lgelb]

Drop a line to the director of the CDC's ALS registry -- are they in it?

Sorry for your successive losses.

 

[Atsugi]

the OP and Laurie are right to report it--you never know what they might find.

But really, I'm honestly not too surprised.

Let's say that there is an average of X cases of a disease in a typical neighborhood each year. That's the mean. There will be some neighborhoods way below X, and some neighborhoods way above X. It would be quite unnatural if every neighborhood just had exactly the average number of cases and there were no outliers or extremes.

But like I say, they might find something. Trivia: John Wayne insisted on making a film called the Conquerer. Howard Hughes produced it. Half of the cast and crew eventually died of cancer, as did Wayne. Nobody knows how many of the extras died of cancer as well. The cancer death toll of that movie was over a hundred people.

Notably, the movie set was 137 miles downwind of Tonapah Nuclear Test Range, where 11 atomic bombs had been exploded over the years.

After location photography was finished, 60 tons of the sand was brought to Hollywood sound stages to provide realism for the remaining photography. Nobody knows where that sand went afterward.

Whenever I'm reminded that Gulf War veterans have a very high rate of ALS, I remember that in the Persian Gulf War of 1991, we all thought that Saddam would use chemical weapons. Later, it turned out that Saddam did not have chemical weapons at the time. Only one army on the field had that capability.

 

[preacherman]

I suppose this should probably be in the Vets forum but just something I thought worthy of noting.....

I have typically seen that military vets are twice as likely to get ALS...

My wife and I attended, for the first time, an ALS caregivers group.
After introductions, we saw that 5 of the families that were there were military vets... only one was not.

2 to 1? .... more like 5 to 1.

 

[Nikki J]

Preacherman you can't generalize from a group of six. It might be chance or it might be factors that made vets more likely to learn about the group or perhaps they are more able to attend as they have supports like vans and housing modifications. The vet statistic has been quite well studied. I believe in the ALS registry 1 in 4 were vets. Though there are issues with the registry they make vets more likely to be counted I think as they would not be flying under the radar

When you look at the lifetime risk of ALS it is not that rare. There are not that many PALS at one time because we die quickly but if a person survives into their 80s their risk has been estimated as 1 in 400 ( I am quoting a Harvard doctor I have also seen 1 in 300 and 1 in 800) the lifetime risk for MS is estimated at 330 though I think it varies a lot with location and Parkinsons is 1 in 500

I was somewhat shocked when my sister was diagnosed that over a dozen acquaintances and friends had had close relatives with ALS including 5 in my work group of 50

 

[Lkaibel]

Preacherman may be on to something though. I have known three other people in my lifetime with ALS besides Brian. All three were vets.

It also depends on what you mean by "rare". In the United States in 2015, about 200,000.00 people were diagnosed with lymphoma. About 5400 were diagnosed with ALS, which is about half as many as were diagnosed with MS. The nuero conditions in general are rae and ALS, while more common than some of the other MND's is indeed rare by that measure.

ALS is not as rare as say, Small Cell Cervical Cancer (300 cases a year in the US on average) or Neuroblastoma (500 in the U.S a year, virtually all children). I think though that ALS is rare enough that it has been underfunded in research for a long while as a result. Say what you will on things like the ice bucket challenge, I am grateful for the cash and the attention to the condition.

 

[preacherman]

Preacherman you can't generalize from a group of six.

.

Granted..... and, just as Mike mentioned, There will be some neighborhoods above the norm and some below.....

It was just an interesting observation.

I will say, though, that just like the presidential election, etc. etc..... the "statistics" (in this case polls) that were presented by 'those who know' were clearly found wanting.
I tend to trust my observations much more than "statistics".

 

[Nikki J]

And of the 12 I mentioned when my sister was diagnosed one was a vet. All three of us are citing anecdotes. The veteran incidence has been very heavily looked at. It is a risk factor definitely but the majority of PALS are not vets according to statistics. And the ALS specialists would be commentingif they were seeing something different. I do worry that the incidence among veterans may rise as the veterans of First Gulf age.

It is a mistake to generalize from a small group. You know I am FALS. The risk of inheriting my genetic defect is fifty percent. One hundred percent of my mother's children inherited it. Eighty percent of my grandfather's children inherited it. If you looked at our family you would question the fifty percent but of course the laws of genetics stand

Politically it is probably helpful to be viewed as not rare. Rare is seen as something unlikely to affect you. If 1 in 400 people get ALS that is more frightening. There were 1200 people in my high school class. Statistically three of us will get ALS and so far as I know only one of us was killed by a terrorist (9/11)

 

[preacherman]

You know I am FALS. The risk of inheriting my genetic defect is fifty percent. One hundred percent of my mother's children inherited it. Eighty percent of my grandfather's children inherited it. If you looked at our family you would question the fifty percent but of course the laws of genetics stand

.

I have put together your family's story through gleaning your posts and it makes me very sad.

Anyway, you state that all of your mother's children inherited the gene and 80% of your grandfather's inherited it.
The "laws" state that the 'risk' is 50%.

We can take your story... since that is the only information that we have here... and figure that the risk (in your family line) is about 90%.

While the scientific 'risk' or probability (or law) is claimed to be 50% based on a simple equation... clearly (to me, based on my observation here) there were other factors in your family that raised the risk to 90%.
So, the 'laws' may not be entirely accurate because there may be factors which have been omitted.
Who's to say, then, what the real risk is?
I guess I would have to have more information.

So what I am left with is 90%.

To get back on point (about neighborhoods)... it is called 'sporadic', but I have a hard time not reading more into what I am seeing than what people see as 'coincidence' or 'fate'.

 

[Nikki J]

It does not work like that. Everyone has two copies of the gene. It is random which copy gets passed on to an off spring so it is 50 /50 whether we got the defective one. We were unlucky. It may even out. I have healthy cousins whose genetic status is unknown though they have a 50 percent risk

Sporadic is used to differentiate it from familial but I think everyone would agree with you that socalled SALS will be found to have a combination of contributing causes both genetic and environmental. It is fairly common to hear the ALS experts speak of ALS as a group of diseases rather than a single entity. This is most obvious with FALS. My c9 disease is different than my friend's sod1 disease. And your "SALS" may be different than that of Lenore's husband.

 

[preacherman]

It does not work like that. Everyone has two copies of the gene. It is random which copy gets passed on to an off spring so it is 50 /50 whether we got the defective one. We were unlucky.

.

I guess my point is that instead of being 'unlucky' there was (to me) or at least could have been some other unknown factor that caused all of your mother's children to inherit the gene.
Such as, say, a specific unknown gene (not the ALS gene) or make-up of genes that your father had that influenced the genetic make-up of your mother's children which caused them all to inherit this gene from your mother, or maybe, say, your father's genes were not so overpowering so that your mother's children inherited more of her genetic make-up than your father's.
Kind of like, some children look exactly like their father, some look exactly like their mother, and some are kind of a combination... or even have little family resemblance at all.

Or perhaps a combination of other un-known genes in her line that made her children much more prone than others who simply have the one specific gene.
Or perhaps an environmental factor.. ..

Any of these things could alter the risk thus altering the 'laws'.
Perhaps your risk was actually 90% based on your mother's gene and whatever other factor could have influenced your genetic make-up.

Without this information I would not think that we could simply say 'fate', or 'unlucky' or 'random'.

 

[Nikki J]

If you toss a coin only 10 times you may not get 50/50 results but over time you will. Brilliant brilliant geneticists study this. I have had the honor of speaking to the man who led one of the research teams that discovered c9. )He and every doctor and geneticist I have spoken to about this say fifty fifty

Mendelian genetics. I have 2 blue eye genes ( I have to because it is a recessive trait and I have blue eyes) if my husband has brown eyes and one parent with blue eyes and one with brown eyes we know he has a brown and a blue gene. Any child has a blue gene from me and a fifty fifty chance of a blue or a brown gene. If they got a brown gene gene they get brown eyes. The c9 mutation is like that brown eye thing.

I don't think I can convince you but I want to put the science here for future readers. People from families who happen to have a pattern like mine could be unnecessarily frightened. 50/50 is bad enough- for ourselves and more so for our children

 

[Dave K]

From time to time it is observed that a number of ALS patients from the same community or work environment may be higher than the expected number of cases. When there is a question of a higher than expected number of people with ALS in one geographic or occupational area, the ALS Association recommends that people raise their questions of an increased incidence of ALS to one or more of the following:

• Local, community, and state public health agencies

• Community and academic medical center neuromuscular neurologists, epidemiologists, and toxicologists

• University schools of public health or medicine

Every new report of ALS clusters should be evaluated by scientists and if necessary, studied by them. Epidemiology staff at one or more of the above-listed agencies is best equipped to conduct an initial exploration to determine if the number of new cases reaches a number that requires more information about the ALS cases and a full study.

 

[Dave K]

Only one army on the field had that capability.

All conspiracy theories aside, it should be noted that after WWII, the U.S. added large quantities of a new Japanese invention--MSG--to its army field rations to make them more palatable (more gravy, anyone?). Even if regarded by the FDA as safe, some chemicals aren't just found in weapons. . . .

 

[affected]

Clusters of ALS are studied and do happen. We still can't find a cause for ALS from studying those.

Here in my area (norther rivers region of NSW Australia) we had a significant cluster in a tiny town called Alstonville. It began to be studied. After some years there were suddenly no new cases of ALS and I know there hasn't been one there for quite a few years now. At the time lots of people were presuming all kinds of things.

This comes to Nikki's well proven point about tossing the coin. For a period of time there was a concentration of PALS in that town. If I throw the coin 10 times I may get heads 10 times. Does that mean I'm particularly unlucky? (if heads meant ALS)
If I throw it another 100 times I may only get heads another 30 times and find I actually get tails more often.

When my Chris was here with me we had a whopping 4 PALS, all diagnosed within months of each other, all in the same town which has an urban population of around 30,000. In the last 3 years no PALS have been diagnosed in this town. Believe me when Chris was ill it felt like the disease was rampaging through the place!

I personally know or have known around 25 PALS - by this I mean had physical personal contact with them, face to face. Not a single one is a vet.

Just throwing the coin