Age and rarity question

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Age and rarity question

Postby Xina535 on October 14th, 2014, 12:13 pm

Hi all, not sure if this is where to post this....but I wanted to know if there are any links to tables or docs which list *** diagnosis by age, sex, region, etc.?

I saw something like this on here before, but is there an actual table, reflecting recent years?

With all of this *** bucket challenge and more exposure, I'm running into many cases where young people (20s-30s), are diagnosed and....it seems to me it's a lot!!! I run into those cases more than elderly cases. And this is of course manifesting in my brain, throwing me into another circle of panic. (I'll be 34 in Jan).

Since I've seen on here a lot that a diagnosis in 20-30s is more rare, so I'd like to ask if anyone knows of a place that has more current stats? Are more recent cases being diagnosed earlier in life?
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Re: Age and rarity question

Postby d4twitch on October 14th, 2014, 7:58 pm

Every kind of statistic I've ran into suggests that if you're under the age of 35 the chance of being diagnosed with *** is very small. It's not impossible, but there are thought to be around 50 cases or less diagnosed each year (between 0.3% and 1% of cases diagnosed in a year). There are roughly 100-250 (debatable :P) people in the USA who have *** under 35 out of the roughly 30,000 people who have it. Your chances of dying to *** from ages 25-34 are roughly 1 in 1,490,000 according to the United States CDC.

There are roughly 41 million Americans from ages 25-34. 41/1.49 = roughly 27 people die from *** in that age range for the USA every year. Not to mention, you are female, so the odds are even more in your favor. Some of these statistics are a bit older (10ish years) as I do think *** is a bit more common. However, it doesn't mean it isn't still a super rare disease for young people. I would think similar statistics would apply to your country, Germany.

You do generally see news stories, etc more often for young people who get it because it is so incredibly rare and usually a bit more heartbreaking to the public eye.

edit: And I can certainly understand the panic, but your profile says you've been twitching since July 2013. Chances are you are fine as it has been well over a year. I've been twitching since April and just noticed my tongue quiver I can't feel a month ago, so I've been sort of in full on panic mode myself. Started having throat clearing 3 weeks ago. Honestly, it is just like ...whatever at this point. We do a lot of this to ourselves with our worrying and anxiety. The chances of me being diagnosed with Bulbar *** are like 1 in 6 million... ie it probably isn't going to happen and I can just live my life :P. And sorry for no tables, just thought I would toss out some statistics I've seen out there.
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Re: Age and rarity question

Postby Xina535 on October 15th, 2014, 7:27 am

thanks - this does help!

still wondering if there is a place somewhere that keeps stats up-to-date, like in maybe a support ALS site or something. But I will not go there and look around for it...
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Re: Age and rarity question

Postby TwitchyDoc on October 15th, 2014, 7:40 am

Why do you want to see it? ALS incidence is somehow increasing and there is the juvenile form and the young-onset form, which form the cases you mentioned. I have seen the demographic study some time ago, I believe googling that will not be that difficult.
But think twice - is that going to help you or scare you? There is no point in analyzing the results.
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Re: Age and rarity question

Postby Xina535 on October 15th, 2014, 11:35 am

I wanted to see if this is still the case that the juvenille (20-30 year old) cases are still as rare as they used to be. I am not seeing that be the case in real life. If I can see that the cases are still very rare then it will help me. Of course, it could go the other way....but I am not googling anything. I thought I would ask if someone had some direct links to the stats, since many people on here do research articles and stuff like that.
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Re: Age and rarity question

Postby Jocruz on October 15th, 2014, 11:56 am

I'm 24, white, male, 5'10", 185 lbs, From South Carolina... and I am obsessed with my symptoms. They consume my life
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Re: Age and rarity question

Postby d4twitch on October 15th, 2014, 3:21 pm

In Young Onset cases (45 years old or below) the male to female ratio is around 3:1 which is much higher than the 45+ age range. Also, bulbar is much rarer in the young onset cases as younger people usually begin with limb onset.

@Jocruz

There are so few cases of people 24 and younger I really just wouldn't worry about it. The people under 35 who get it are usually diagnosed in the 26-34 range (moreso in the 30s...obviously chances continue to increase with age until 60s/70s) and even then, like I said, it is pretty rare.

One statistic I've been curious on is just how many people are thought to have muscle fasciculations (as often as we have them), but I'm not sure we'll ever have that number :P. And FYI, I really like to read statistics about just about anything oddly enough.
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Re: Age and rarity question

Postby SecretAgentMan on October 15th, 2014, 4:22 pm

Statistics don't matter to fear. When I first started manifesting all the crazy neurological and sensory symptoms associated with BFS I did what most people here did and went to WebMD. Do you know what I diagnosed myself with? Mad Cow Disease. It was on the back of my mind when I went into my WebMD search because I had just recently been reminded that I am not allowed to donate blood. There are several factors that rule you out as a blood or organ donor. If you lived in the UK during certain years during the 1980s you are a risk of carrying Mad Cow Disease. I fit my symptoms to match it and spent one of the most terrified nights of my life tossing and turning thinking of the slow, miserable, and painful death I would die. Do you know how many diagnosed cases of Mad Cow there have been in the United States (at least at the time of my last research)? One. Just one. Out of the hundreds of millions living here, there was only one confirmed and diagnosed case. Did the statistics matter? No, I had myself convinced that I was number 2. You cannot rationalize with fear. You have to come to terms with it on an emotional level and emotions aren't logical.

I am not trying to discourage you or deflate you here. I am trying to help by passing along my hard learned lessons. If you go spending hours researching statistics you will be wasting your time and energy. It does not matter how low the numbers are. If you can convince yourself there is a chance your fear will play out those scenarios regardless of how rare they are by logical means. Spend your time learning how fear works. Spend your time learning how to emotionally process fear. Spend your time learning to focus your mind and find peace within yourself. That is a worthy investment that will pay off in spades. There are tools and techniques that are proven effective. Learn about them. Spend more time focusing on changing your mental state of being than you spend worrying and you will shift. It may be difficult at first, but it is worth the effort. Just my 2 cents...
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Age and rarity question

Postby Xina535 on October 16th, 2014, 2:57 am

It is probably true that statistics don't work with fear. I can really see that happening, people convincing themselves they are #2.

I am just thrown by the number of young people and young women that I've come across that have ***. There was a young man who was on the Ellen Show recently. He was diagnosed at 26. I felt for him so much because I thought this is such a rare case, the rare stick got him. He was also funny and charming so I followed him on Twitter. He's reposted some things which has exposed me to at least 10 other very young people with ALS, many women. I thought, "Wow, it does not look as rare as people make it seem. How did I run into so many in just a few minutes**? Are these all rare cases?"

On one of them, the guy's wheelchair had a sign on the back which said he was 29 and that "the disease is spreading", and to donate to such and such cause. That's what really made me think, "is it still as rare as we discuss on here?"

(**Key word, "minutes". I did not spend a lot of time looking or trying to find them. That's how easy they were to find. Also, not spending any sort of hours or even minutes googling stats. That is why I posted on here if anyone had direct links, I am not going to search for them. It's not that important to me to know. BTW, I have since unfollowed that man on Twitter after seeing a few of his posts. Still support and feel for him in my heart though).
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Re: Age and rarity question

Postby Yuliasir on October 16th, 2014, 3:31 am

Xina, oldsters with ALS usually do not have blogs :) that is the reason.

there is a huge world. Maybe 3 billion people of which have internet access more or less. Most of those are younger than 50. that is why ALS in the net seems to be younger than it is in reality. When you take medical stats, it would be the same - rare yongsters, a bit more after 30, even a bit more after 40, maximum somwhere at 60-70, then again rare cases (as not many people live till late 70s).

When I was reading or local ALS forum three years ago I found that most of users or their proxies were also not so old - between 30 and 50 which reflects again the most typical layer of internet users, not typical age of ALS patients. If you read Wikipedia article regarding ALS, you may found that in the list of famous people died from ALS absolute maximum comes for people of well over 60 :)
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Re: Age and rarity question

Postby TwitchyDoc on October 16th, 2014, 3:55 am

Yulia has got the point - you will not usually find blogs of patients above 60 etc and hence it might look there are more of the younger patients. Years ago, you did not know about them because they did not go online.

But on the other hand, you are right - ALS is not that rare and unfortunately (speaking in general, not related to BFS) the incidence is increasing, as demonstrated by Pritchard & Sunak. But this also applies for other neurodegenerative diseases (however, in these cases it is the increasing longevity that causes the issue).
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Re: Age and rarity question

Postby Yuliasir on October 16th, 2014, 4:04 am

I may also admit that inidence may increase becasue of better coverage and better availability of specialized centers, due to refined criteria etc. - as it happens to many other conditions.
Again on the same Russian ALS forums I had read several stories of possibly familial ALS (Like - his unkle had died and his second cousing grandpa too...), adn as per desription this was ALS (slowly developed paralysis), but surely those people were never diagnosed as they may not even see a doctor :)
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Re: Age and rarity question

Postby Xina535 on October 16th, 2014, 7:01 am

Thanks everyone, this is great input!
I will add that those younger cases I ran into online were all US. And I thought there were only like X many cases (a very low number) of people diagnosed in that age range, and so I wondered, "I found half (of X%) of them in 10 minutes, online!" See, what I mean?
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Re: Age and rarity question

Postby d4twitch on October 16th, 2014, 1:18 pm

Yeah, like everyone is saying, younger people tend to use the internet more often. And the guy you saw on Ellen had familial ALS. His mom and grandmother have had it.
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Re: Age and rarity question

Postby Xina535 on October 16th, 2014, 3:47 pm

Yes! That's him, and yes it's in his family. Is the familial kind more common for younger people than the random kind?
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Re: Age and rarity question

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