R. Bedlack: Lou Gehrig's Disease, affects one in 600 people (???????)

[jethro]

i read and heard it. it turns that als is more frequent than ms. it is not mistake. please comment.

... or i am lost in translation, since english is not my native l.

 

[Gorby]

I thought lifetime risk was actually higher. I've heard 1 in 400. Some people even think 1 in 300.

 

[lgelb]

Once you've turned 18, 1 in 350 for men and 1 in 420 for women.

 

[jethro]

please put some light on it for me:
1. R.B says: LGD affects one in 600 people
2. Officialy, there are 2-5:100 000 pals (lets say 1 in 50000 people), so als is rare disease
my family doc never had pals, I am the first.
my neuro in referent center says that he diagnoses 1 pals/week. country has 4 000 000., according to 2., we are app 1.25 pals on 100000 (+ undiagnosed, lets say 3:100000).
Or we are talking about completelly different things?

 

[Nikki J]

Prevalence of ALS is different than incidence. The number of PALS at any given moment is low because once diagnosed most people die quickly. So the question how many PALS are there in a given area will be answered with a far lower number than the question how many people in that area will get ALS ever in their lifetime.

the lower the life expectancy in that area the lower both numbers will be because ALS cases increase with age

 

[jethro]

@nikki thx. nobody talks about median and other statistic parameters. sure, if you count just population 60+, then numbers are higher.
i reffered just to RB's: "LGD affects one in 600 people" he also said "if you have 600 friends on facebook, it is likely that there is one pals". this sounds weird, 'cause one pals can have 5000 friends/followers.

 

[Dee Dee 0617]

Statistics (for America ) have reflected 2-per 100,000 people per year. Lou Gehrig died 79 years ago. Rounding numbers down a conservative number of people who have died in the US from ALS is 549,000 since 1941

 

[jethro]

Statistics (for America ) have reflected 2-per 100,000 people per year. Lou Gehrig died 79 years ago. Rounding numbers down a conservative number of people who have died in the US from ALS is 549,000 since 1941

wonder how did they count it. summ looks very accurate (in one thousand). there were app 100 bilion (100 000 000 000) people on earth by now. were there pals in 1800ies? it was nondescriptive disease, if it existed. they probablly used leeches to cure it. god knows. we made just one huge step in als description. als will be cured as soon as they invent medicine to change eyes color.

 

[Nikki J]

ALS was identified in 1869 Before it was called by different names. Creeping paralysis was one and it something the FALS people look for when tracing their family history. There is a written description of a farmer having it in the 1820s and that it was familial. His descendants are SOD1. Earlier deaths made it much rarer particularly SALS which tends to strike later.

my genetic defect is believed to have originated with the Vikings who spread it in their travels but they lived shorter lives so it didn’t manifest so often

 

[jethro]

nikki, before i die, i want to set up all the things: familly tree, make list of inherited diseases, real estates... many more. how did you find out about Viking? why it is "believed"? i am almost pure balkan(oid), 99% celtic, ilirs... i used commercial tests - 23&me along with myheritage. i have 1% askenazi gene, i counted it was app 1700. i have absolutelly no familly data, but i reember that medium finger of my father dropped when he was 74, died of cancer at 75. no sourcem no anything. nobody knew why. neuro didnt know and he didnt have diagnose. nobody in familly (as far as i know, but my knowledge in this case worths less than 2 cents) had neuro problems. it is scarry how i am helpless to do anything.

 

[Nikki J]

The viking is specific to my gene mutation. They can estimate somehow when the mutation arose and by the pattern of spread and current distribution of the mutation they surmised it very well could have been viking scandinavia has very high rates also the UK especially in the north. My family comes from coastal England. It was a surprise to no one that we are c9. Most ALS is not FALS meaning an autosomal dominant genetic pattern ( or rarely a recessive but identifiable trait