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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.

#31

Post by Mz »

epynonymous wrote: post #30
Mz wrote: post #21

Earlier quoted context omitted.

I'm not a lawyer but I do belong to a number of health lists and I do run a health site and my day job is in a related industry, so I get ongoing training and exposure to some of the laws and these types of issues. a) All email support groups (that I belong to) have huge disclaimers at the bottom of every email announcing something like "This is a free and open discussion of health issues. This is not medical advice.…

thanks mz, this has been incredibly informative, i agree that there's no magic bullet hand waving that could approve/disapprove this, and thanks for sharing your experiences. i was thinking of the goal of this site, it would be all non-profit in hopes of helping mankind to bring an alternative for the machine that is today's modern medical system. i will noodle on this a bit more, the last thing i want is someone to…

thanks mz

No problem.

goal of this site: helping mankind to bring an alternative for the machine that is today's modern medical system

Yeah, I'm working on a piece of that. It's slow going to win mindshare in this space. Alternative stuff tends to have a bad rep in a lot of circles. There's lots of challenges with that piece of it alone.

the last thing i want is someone to be harmed by something that i've done, especially if the goal is to help.

Ditto. I have often contemplated taking down my website. But given how deadly my condition is, I feel doing nothing is the bigger danger. :-/

Peace.

Re: My social network helped diagnose a rare disease that our doctors missed.

#32

Post by sneak »

rektide wrote: post #27

Her network didnt produce this, a friend who had a kid with the same disease produced this. Stop mis-attributing individual connections as being performed by the collective. Those Nazi photographs that made the rounds recently? At the time they were heralded as a "wisdom of the crowds" moment, some great network shifting in to gear to crunch a hard problem. The case here & there are the same; it's not about the netwo…

Arguably the network vastly increases the chances that we will connect to the right individuals by disseminating information quickly and broadly.

All "collective knowledge" exists in someone's brain somewhere, just like your gmail messages exist on three hard disks in three servers scattered somewhere among the millions.

Hivemind? No. Individual mind, plugged into the hive, as a participant? Yes.

Re: My social network helped diagnose a rare disease that our doctors missed.

#33

Post by pbhjpbhj »

VladRussian wrote: post #28
FaceKicker wrote: post #5

Bored 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.)

>three of her FB friends knew about a rare immune disorder. sounds like not that rare. Or is it rare just because doctor couldn't diagnose it? Just an experiment - googled "Face swelling" and the first page of the first organic result has "If you experience facial swelling accompanied by difficulty breathing, hives, intense distress, fever, redness, or warmth, seek immediate medical care (call 911)." I see how the fo…

There wasn't really a very clear timeline but you appear to have confused things somewhat.

The parents noticed the rash and swelling on the Sunday and so were in the paediatricians office that same day. If the [emergency] paediatrician gives a clear diagnosis in person would you really say "hang on a minute Google's SERPs say I should call 911". You're standing there with the doctor, you don't need to call for one.

The next day [Monday] it seems the mother sent images to her family doctor. The test to confirm the diagnosis came back false and one of the images sent to the doctor was incidentally posted on Facebook. A friend, mother of a Kawasaki disease sufferer, and a relative who specialised in cardiology both offered the diagnosis that pushed the mother to go to seek emergency medical aid for the second time.

She doesn't say what her family doctor's reaction to the second diagnosis was nor interestingly does it appear that the paediatrician she sought counsel from offer an alternate diagnosis when tests came back negative (though this info could just be missing).

Re: My social network helped diagnose a rare disease that our doctors missed.

#34

Post by sorbus »

VladRussian wrote: post #28
FaceKicker wrote: post #5

Bored 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.)

>three of her FB friends knew about a rare immune disorder. sounds like not that rare. Or is it rare just because doctor couldn't diagnose it? Just an experiment - googled "Face swelling" and the first page of the first organic result has "If you experience facial swelling accompanied by difficulty breathing, hives, intense distress, fever, redness, or warmth, seek immediate medical care (call 911)." I see how the fo…

> sounds like not that rare. Or is it rare just because doctor couldn't diagnose it?

The highest incidence of Kawasaki Disease is in Japan, at 0.175% (175 cases per 100,000 children younger than five). In the UK, it's around 0.008%, though may be on the rise. In the USA, it's between 0.009% and 0.019%, according to the CDC. That's certainly fairly rare, and it doesn't surprise me that it wasn't the first thing the doctor thought - if you read the article to the end, you'll notice that he said that "[he] was actually just thinking it could be Kawasaki disease," after she called him from the hospital. As another person mentioned, he was maybe a a few hours behind the social network in his diagnosis.

Re: My social network helped diagnose a rare disease that our doctors missed.

#35

Post by pbhjpbhj »

trentfowler wrote: post #25

The title is not sensationalist enough. It should read: "How Facebook Cured Kawasaki's Disease"

The title is descriptive of the story, succinct, without dramatisation or hyperbole. What would you have it read instead?

Re: My social network helped diagnose a rare disease that our doctors missed.

#36

Post by pbhjpbhj »

vl wrote: post #22

Well, may be article is sensationalized and doesn't reflect the reality, but wasn't it obvious that they they had to go to the hospital on the second day when symptoms got worse despite the amoxicillin? "Eyes swelled shut" and you still talking to your Facebook friends?

>"Eyes swelled shut" and you still talking to your Facebook friends?

She was mailing images to her family doctor whilst awaiting test results and had already been given a diagnosis and treatment. The mother was clearly questioning the diagnosis. The use of one of the images that she'd sent to the doctor was incidental, a progress report for family and friends. She probably didn't want to use the phone for fear of missing the doctor's call but still wanted to let people (her mother is mentioned) updated.

Could you say how you feel the article is sensationalised?

Re: My social network helped diagnose a rare disease that our doctors missed.

#37

Post by pbhjpbhj »

jrockway wrote: post #11
sukuriant wrote: post #3

Earlier quoted context omitted.

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.

I mean, friends looking through a page of your random thoughts, and then typing in their thoughts about that thought. It's not something people really did before Facebook; sure, you could call people "just to chat", but this is on a much greater scale. This article is a look at the good that can come from this. (I say "bored friends" because people don't read Facebook updates when they are engaged in highly-stimulati…

I don't think you're quite being fair. I've certainly used FB to check on someone who was ill without having to call them directly; not out of boredom but out of concern. Also simply not being involved in complex mental activity doesn't make one bored.

Re: My social network helped diagnose a rare disease that our doctors missed.

#38

Post by vl »

pbhjpbhj wrote: post #36
vl wrote: post #22

Well, may be article is sensationalized and doesn't reflect the reality, but wasn't it obvious that they they had to go to the hospital on the second day when symptoms got worse despite the amoxicillin? "Eyes swelled shut" and you still talking to your Facebook friends?

> "Eyes swelled shut" and you still talking to your Facebook friends? She was mailing images to her family doctor whilst awaiting test results and had already been given a diagnosis and treatment. The mother was clearly questioning the diagnosis. The use of one of the images that she'd sent to the doctor was incidental, a progress report for family and friends. She probably didn't want to use the phone for fear of mi…

>Could you say how you feel the article is sensationalised?

May be in reality situation on the second day was not as obvious as described in the article, but from the article it's clear that treatment was not working, and new measures were required. If on the second day of taking antibiotics situation is getting worse, at least for me it's the indication to go to the hospital.

Re: My social network helped diagnose a rare disease that our doctors missed.

#39

Post by trentfowler »

pbhjpbhj wrote: post #35
trentfowler wrote: post #25

The title is not sensationalist enough. It should read: "How Facebook Cured Kawasaki's Disease"

The title is descriptive of the story, succinct, without dramatisation or hyperbole. What would you have it read instead?

The title is perfect. Looking back, I'm not surprised you took it the wrong way. It was a bad joke.

Re: My social network helped diagnose a rare disease that our doctors missed.

#40

Post by jrockway »

pbhjpbhj wrote: post #37
jrockway wrote: post #11

Earlier quoted context omitted.

I mean, friends looking through a page of your random thoughts, and then typing in their thoughts about that thought. It's not something people really did before Facebook; sure, you could call people "just to chat", but this is on a much greater scale. This article is a look at the good that can come from this. (I say "bored friends" because people don't read Facebook updates when they are engaged in highly-stimulati…

I don't think you're quite being fair. I've certainly used FB to check on someone who was ill without having to call them directly; not out of boredom but out of concern. Also simply not being involved in complex mental activity doesn't make one bored.

Concern couldn't have been the case this time, though, because people found out about the kid's illness by randomly checking Facebook.

In conclusion, I find my one sentence analysis to be largely accurate.

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