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I have a coworker who's son just got this diagnosis. This stuff is scary. They caught it fast and were able to treat it but he still lost most control of his le

I have a coworker who's son just got this diagnosis. This stuff is scary. They caught it fast and were able to treat it but he still lost most control of his left arm. Long road to recovery but it seems some kids aren't as lucky.

14 7y ago
I just got news that one of my kids Taekwondo instructors may have this. He was a healthy 21 year old male. Everyone is feeling devastated as he was so young and not completely reliant on life support for his breathing. No one knows if he will recover and it is terrifying. As someone with several kids this is really worrying.
- ajross 7y ago
  Are you guys sure? Per that wikipedia page, there were 233 cases known as of last year. Total. It sorta strains reason that people close to two of those cases just happen to arrive at a thread in a niche forum site and report infections at the same time. Maybe there's a confusion of which diagnosis is which? It's extremely rare, just barely at the level where epidemiology can inform decisions, which is the point of the linked article. Reporting is spotty and they're trying to get doctors educated.
  - dleslie 7y ago
    They're talking about relations with one or more degrees of separation. A coworker's kid and an instructor of their own kids. Including several degrees of separation allows one to find matches much more readily. Perhaps you've played six degrees of Kevin Bacon?
    - darkpuma 7y ago
      If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check. So you've got less than 30 people in this thread accounting for let's call it 60,000 second degree connections in a world with 7,700,000,000 people and less than 300 people world-wide with the illness. I don't know, even with birthday paradox stuff it still seems pretty unlikely to me. Even if we say half the population are losers with no friends and should be excluded from the calculation and therefore bump that 45 figure to 90, 90^2*30 is still a mere 243,000. If you knock it up to three degrees of separation with 90 first degree connections per person, then for 30 people you're passed 21 million which is getting somewhere I guess. The numbers in the Kevin Bacon game grow very fast, but they still start out relatively small. And two degrees is relatively small.
      - Retra 7y ago
        They're not only checking two degrees though, they're checking as far as they can and just happen to find them within two degrees. So it's not "how likely are they to find them in two degrees", but "how likely are they to find them at any depth, and then given that they've found them, how likely are they to lie with two degrees."
      - feral 7y ago
        > If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check. 45 is probably much too low. Your model there doesn't take into account any clustering which is really important. You want to think of a higher number of first degree connections (higher average node degree), but where there's a large overlap in the second degree connections each first degree connection provides (so you can't just do N^6).
      - Cass 7y ago
        On the web, there's usually a ratio of readers/lurkers to commenters of somewhere between 100 to 1 and 1000 to 1. So if 30 people comment on this article, that means 300 to 3000 are reading it. That means your second degree connections need to be two or three orders of magnitude higher.
        deleted 7y ago
        [deleted]
    - deleted 7y ago
      [deleted]
  - 14 7y ago
    As this is someone who is not my family and only instruct my kids I would have to say no I am not sure but it is a candidate. It happened so fast I guess. I just checked out his gofundme and he just passed this morning I am a little in shock. If I hear more I will update. Here is a link to the gofundme if anyone can help out. https://www.gofundme.com/f/n6kda7-for-nick https://www.gofundme.com/f/n6kda7-for-nick
- Waterluvian 7y ago
  As a parent I've come up with a mechanism to help when things like this worry me. I have basically no power to protect against things like this. But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity. So any time I'm having a moment of worry about their well being I find an extra hour to carve out of my day and take them to the park. It's therapeutic and makes me feel less helpless and feels like I'm gradually equipping them with the life trait of being an active person.
  - couchand 7y ago
    > But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity. Not to mention cars, guns, and drowning.
    - dhxjsbd 7y ago
      Guns? Cars? Small stuff ;) I’m worried about medical malpractice. Quality stats are hard to come by, but it’s estimated to be up a top 3 killer after cancer and heart disease in the US!
      - adrianN 7y ago
        Probably not a top killer of children and young adults though.
        barry-cotter 7y ago
        Could be. Children and young adults go to hospital too and if medical errors are third only to the two biggest killers, which children will not generally suffer from, medical error could plausibly be the biggest killer. More likely it’s trauma from doing stupid things but if medical error is that prevalent it certainly kills plenty of children.
  - mlrtime 7y ago
    This is the stoic mindset, worry about only things you have control over.

14 7y ago

I just got news that one of my kids Taekwondo instructors may have this. He was a healthy 21 year old male. Everyone is feeling devastated as he was so young and not completely reliant on life support for his breathing. No one knows if he will recover and it is terrifying. As someone with several kids this is really worrying.

ajross 7y ago
Are you guys sure? Per that wikipedia page, there were 233 cases known as of last year. Total. It sorta strains reason that people close to two of those cases just happen to arrive at a thread in a niche forum site and report infections at the same time. Maybe there's a confusion of which diagnosis is which? It's extremely rare, just barely at the level where epidemiology can inform decisions, which is the point of the linked article. Reporting is spotty and they're trying to get doctors educated.
- dleslie 7y ago
  They're talking about relations with one or more degrees of separation. A coworker's kid and an instructor of their own kids. Including several degrees of separation allows one to find matches much more readily. Perhaps you've played six degrees of Kevin Bacon?
  - darkpuma 7y ago
    If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check. So you've got less than 30 people in this thread accounting for let's call it 60,000 second degree connections in a world with 7,700,000,000 people and less than 300 people world-wide with the illness. I don't know, even with birthday paradox stuff it still seems pretty unlikely to me. Even if we say half the population are losers with no friends and should be excluded from the calculation and therefore bump that 45 figure to 90, 90^2*30 is still a mere 243,000. If you knock it up to three degrees of separation with 90 first degree connections per person, then for 30 people you're passed 21 million which is getting somewhere I guess. The numbers in the Kevin Bacon game grow very fast, but they still start out relatively small. And two degrees is relatively small.
    - Retra 7y ago
      They're not only checking two degrees though, they're checking as far as they can and just happen to find them within two degrees. So it's not "how likely are they to find them in two degrees", but "how likely are they to find them at any depth, and then given that they've found them, how likely are they to lie with two degrees."
    - feral 7y ago
      > If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check. 45 is probably much too low. Your model there doesn't take into account any clustering which is really important. You want to think of a higher number of first degree connections (higher average node degree), but where there's a large overlap in the second degree connections each first degree connection provides (so you can't just do N^6).
    - Cass 7y ago
      On the web, there's usually a ratio of readers/lurkers to commenters of somewhere between 100 to 1 and 1000 to 1. So if 30 people comment on this article, that means 300 to 3000 are reading it. That means your second degree connections need to be two or three orders of magnitude higher.
      - deleted 7y ago
        [deleted]
  - deleted 7y ago
    [deleted]
- 14 7y ago
  As this is someone who is not my family and only instruct my kids I would have to say no I am not sure but it is a candidate. It happened so fast I guess. I just checked out his gofundme and he just passed this morning I am a little in shock. If I hear more I will update. Here is a link to the gofundme if anyone can help out. https://www.gofundme.com/f/n6kda7-for-nick https://www.gofundme.com/f/n6kda7-for-nick
Waterluvian 7y ago
As a parent I've come up with a mechanism to help when things like this worry me. I have basically no power to protect against things like this. But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity. So any time I'm having a moment of worry about their well being I find an extra hour to carve out of my day and take them to the park. It's therapeutic and makes me feel less helpless and feels like I'm gradually equipping them with the life trait of being an active person.
- couchand 7y ago
  > But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity. Not to mention cars, guns, and drowning.
  - dhxjsbd 7y ago
    Guns? Cars? Small stuff ;) I’m worried about medical malpractice. Quality stats are hard to come by, but it’s estimated to be up a top 3 killer after cancer and heart disease in the US!
    - adrianN 7y ago
      Probably not a top killer of children and young adults though.
      - barry-cotter 7y ago
        Could be. Children and young adults go to hospital too and if medical errors are third only to the two biggest killers, which children will not generally suffer from, medical error could plausibly be the biggest killer. More likely it’s trauma from doing stupid things but if medical error is that prevalent it certainly kills plenty of children.
- mlrtime 7y ago
  This is the stoic mindset, worry about only things you have control over.