My social network helped diagnose a rare disease that our doctors missed.
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Re: My social network helped diagnose a rare disease that our doctors missed.
#2Never underestimate the usefulness of bored friends.
Re: My social network helped diagnose a rare disease that our doctors missed.
#3Never underestimate the usefulness of bored friends.
You mean friends that have been through life and had experiences you haven't, right? I believe it was the one that had a child that had had the illness that first suggested that illness.
Re: My social network helped diagnose a rare disease that our doctors missed.
#4Awesome example of crowd-sourcing.
To be honest, if I was her, I'd be a little upset (not sure at who but maybe just at the situation) that it wasn't caught sooner. It's great that the kid is alive, but judging by what the author wrote about the disease, it sounds like he is worse off for the delay.
The ideal user experience would give me more control. I think it's fine to outsource the decision-making process to doctors if you so choose, but there should also be an easy way to get a list of every single possibility, along with associated cost of eliminating those possibilities, etc. Yes, some diseases are really rare, but maybe the consequences of leaving it uncaught for some period of time are severe enough that I'm willing to pay to test for it up-front.
I'm sure most people would still opt for just letting the doctor handle everything (paradox of choice, etc.) but it seems broken that this is not at least an option. I suppose you could theoretically push your physician today for this information, but my intuition is that it'd be difficult.
I don't know what it would take to make this a reality (my guess is a lot of changes in the economic structure of healthcare would need to be made) but I think we should strive toward this ideal.
Re: My social network helped diagnose a rare disease that our doctors missed.
#5Bored stay-at-home moms (and I know you all read HN), please don't take this article as a suggestion to make even more Facebook posts about your children. :(
(Seriously though, pretty amazing story...I find it pretty unbelievable that not just one but three of her FB friends knew about a rare immune disorder.)
Re: My social network helped diagnose a rare disease that our doctors missed.
#6Bored stay-at-home moms (and I know you all read HN), please don't take this article as a suggestion to make even more Facebook posts about your children. :( (Seriously though, pretty amazing story...I find it pretty unbelievable that not just one but three of her FB friends knew about a rare immune disorder.)
Bored stay-at-home moms (and I know you all read HN)
I'm no longer a bored, stay-at-home mom and I really don't do Facebook, but I still have connections to the types of communities (including some health lists) with high-ish numbers of full time moms and I do read HN. So, in theory, I could start posting links like this around and get such people here...
;-)
Re: My social network helped diagnose a rare disease that our doctors missed.
#7Awesome example of crowd-sourcing. To be honest, if I was her, I'd be a little upset (not sure at who but maybe just at the situation) that it wasn't caught sooner. It's great that the kid is alive, but judging by what the author wrote about the disease, it sounds like he is worse off for the delay. The ideal user experience would give me more control. I think it's fine to outsource the decision-making process to doc…
The problem is that misdiagnosis is really easy.
Lets take HIV for example. First symptoms of infection are usually a high fever and very sick -- like a really bad flu (after this initial spike, you can go asymptomatic for years).
So you go to the doctor with flu-like symptoms, and they give you an HIV test. Now if you haven't had unprotected sex or blood transfusion with an at risk partner the odds of you having contracted HIV is extremely low. So the general recommendation is not to test you for HIV. But you say, "I want to rule it out. Give me the HIV test." Modern medical testing is rarely 100%. The HIV test is 99% accurate, but 1% of the time you won't have HIV, but it will say you do.
So imagine a population of 1000 zero risk people who take the test. On average 10 are going to come back as HIV positive. And maybe start an HIV regimine, rather than just realizing that its just the flu, which would have gone away in another day.
The point is you try to focus on what is common first. You rule those things out first, before diving into the more obscure. This not only reduces healthcare costs, but also reduces the burden on the healthcare system, and likely improves the health of virtually everybody.
Re: My social network helped diagnose a rare disease that our doctors missed.
#8Bored stay-at-home moms (and I know you all read HN), please don't take this article as a suggestion to make even more Facebook posts about your children. :( (Seriously though, pretty amazing story...I find it pretty unbelievable that not just one but three of her FB friends knew about a rare immune disorder.)
Bored stay-at-home moms (and I know you all read HN) I'm no longer a bored, stay-at-home mom and I really don't do Facebook, but I still have connections to the types of communities (including some health lists) with high-ish numbers of full time moms and I do read HN. So, in theory, I could start posting links like this around and get such people here... ;-)
I have to say it would be pretty awesome if there was a sudden influx in bored SAHMs learning to program / contributing to open source / starting their own company.
Re: My social network helped diagnose a rare disease that our doctors missed.
#9Bored stay-at-home moms (and I know you all read HN), please don't take this article as a suggestion to make even more Facebook posts about your children. :( (Seriously though, pretty amazing story...I find it pretty unbelievable that not just one but three of her FB friends knew about a rare immune disorder.)
Well two of them did work in pediatrics where they'd both presumably seen it before, it might be rare but obviously wasn't in the "once in a lifetime" category.
Re: My social network helped diagnose a rare disease that our doctors missed.
#10Awesome example of crowd-sourcing. To be honest, if I was her, I'd be a little upset (not sure at who but maybe just at the situation) that it wasn't caught sooner. It's great that the kid is alive, but judging by what the author wrote about the disease, it sounds like he is worse off for the delay. The ideal user experience would give me more control. I think it's fine to outsource the decision-making process to doc…
The problem is that misdiagnosis is really easy. Lets take HIV for example. First symptoms of infection are usually a high fever and very sick -- like a really bad flu (after this initial spike, you can go asymptomatic for years). So you go to the doctor with flu-like symptoms, and they give you an HIV test. Now if you haven't had unprotected sex or blood transfusion with an at risk partner the odds of you having con…
I understand what you're trying to say, but in your specific example, it's more like 15/1000 would be sent on for confirmatory testing (western blot), of which only about 1 in 10,000 would be false positives. In your scenario, this screening of those who request the test but otherwise do not need it would result in statistically very few false positives, on the order of 1 in 175,000 of those who make the request.
Perhaps a more likely error would be among those who request testing for Lyme disease (currently a popular self diagnosis) and thus get put on an unnecessary regimen of doxycycline. I'm racking my brain trying to think of an example that would be much, much worse. Perhaps testing for antinuclear antibodies and getting diagnosed with lupus?