- Dec 25, 2008
I was using the search feature to see how many people who had an account were ALS patients, and how many of those people fall within a certain age range. I know I've always wondered how many people who get ALS are under 30 when they get it, because I think a disproportionate amount of media coverage gets centered around early-onset cases - I think people find it more compelling to hear about someone in their 20s getting ALS than to hear about someone getting it who's lived a longer life. anyway, the problem with this is most people end up seeing ALS solely through the eyes of the media, which cause a lot of high-anxiety/hypochondriac-type people (like myself) to freak out, thinking that it's actually NOT uncommon to be diagnoses with ALS at such a young age. anyway, regarding the site: using the search feature, you can see how many people are registered under the site who have ALS - looks like around 2400 ALS patients are registered - and then you can narrow the search within the ALS community to those who are a certain age, bulbar/limb-onset, male/female, parts of the world, etc. I checked how many patients were under 30..... there were 41. 2400/41 = 58, so for every 58 people who are diagnosed with ALS, only one in those 58 will be under 30 when they're diagnosed. Does this sound right? It makes me feel a lot better, knowing the odds are so slim for getting it before 30. There are 108 members who are 30-35, meaning 1 in every 22 ALS patients will be diagnosed at that age. Apparently, Bulbar cases are clustered in the older age groups even more than ALS in general is: the number of bulbar cases is about 1/5, overall, but in the under 30 category, it's less than 1/10. My question is, does this seem like a good way to get at least a reasonable idea of what the age statistics are really like with ALS? If one's lifetime risk of getting ALS is 1/400, and only 1/58 of THOSE people happen to be under 30 when they're diagnosed, that should mean about 1/23,000 people in the general pop. are fated to get ALS before 30. Does that seem like a reasonable conclusion to make? If we accept that bulbar cases are about 3 out of every 10 ALS cases in general, that would work out to about 1/1300 lifetime risk of getting bulbar ALS, and only 4 of the 450 bulbar patients are under 30. 1/1300 people get bulbar ALS, and 1/110 of those people are under 30. That works out to a 1 in 143,000 chance of getting bulbar ALS before age 30. I realize these stats might be skewed by younger patients being more likely to use the internet as a support tool, and maybe not as many men would use it, since men are, generally-speaking, less likely to reach out for support. Anyway, am I way out in left field on this, or do you guys think this gives at least a rough idea of what the age statistics are like with ALS?
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