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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.

#21

Post by Mz »

epynonymous wrote: post #16
epynonymous wrote: post #15

i was thinking about a site like this awhile back because it seems doctors typically only have a few data points on most matters. the site would almost be analogous to code review except you're posting symptoms and pictures instead of code, the result is that you get more sets of eyes on the problem. the only drawback is that the wrong diagnosis could be fatal whereas a bad checkin problem just breaks the build or ca…

btw this is an invitation for lawyers or legal experts to prove me wrong so i can go build this. i personally found a need for this type of site a while back for myself, of course i would take each person's feedback with a (larger) grain of salt and still consult my doctors.

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. Please consult your doctor...blah blah blah" to try to cover their butts.

b) A published author in the alternative health space actively encouraged me to adapt his own written disclaimer to put on my website to try to help me cover my butt. He has at least once been dragged before a medical review board/court/some such because of the information he disseminates. So, yeah, it's a real problem.

c) Privacy laws are a big deal and there are very big problems with encouraging people to post pics of symptoms, including how much of the body to show. I have seen a photo of a naked child (from the back) covered in a rash posted on a group and I think it was handled carefully by someone knowledgeable (the woman who posted it was herself a lawyer, so I imagine she knew what she was doing) but I can see this space being open to serious pitfalls in that regard.

d) I went and did the very rude thing of getting myself healthy when that is supposed to be impossible given my diagnosis. I have been repeatedly told that I am engaging in irresponsible, dangerous, evil behavior for talking about how I accomplished that, even though the path I followed is really incredibly conservative (for example: get informed about food chemistry because everything you put in your mouth has an impact on your body chemistry).

So, in short, there are some very big problems/challenges with your idea. Your concerns are real concerns, not neurotic worries at all. That doesn't mean it can't be done. But, no, there is no magic wand of "I talked to a lawyer and it's all okay now". You would have a lot of work to do to make this at all viable.

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

#22

Post by vl »

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?

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

#23

Post by swampthing »

kenjackson wrote: post #20
swampthing wrote: post #12

Earlier quoted context omitted.

Ideally, if your HIV test comes back positive, you'd also be given information such as how likely false positives are and what the economic / health consequences of starting the HIV regimine (versus getting a second test) are. I understand that the way things are currently structured, it might be detrimental to the system as a whole to dive into the more obscure stuff. However, it's safe to say in this case, this boy…

Ideally, if your HIV test comes back positive, you'd also be given information such as how likely false positives Unfortunately, try telling someone that the ELISA test is 99% accurate to resasure them that they probably aren't HIV positive. :-) Ideally, there wouldn't be this tradeoff between the efficiency of the system and any one individual's health. If we could diagnose w/ 100% accuracy then it would be easy. If…

If we could diagnose w/ 100% accuracy then it would be easy. If our medications had no side effects and resistance to antibiotics didn't then it would be easy. But once you put those two things together, even throwing economics aside, you have to be careful that you're not harming more people than helping, net.

Well, in my last paragraph, I said it probably wouldn't be easy. Doesn't mean we shouldn't try. I admit, I have a bias towards personal choice - I suppose it's possible society would be worse off with more freedom in this case.

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

#24

Post by russell »

kscaldef wrote: post #13

a) As far as I can tell from the article, her doctor was at most a couple hours behind her "social network". b) Her social network also produced "various diagnoses" which were presumably wrong. c) I wonder how often this sort of thing happens, vs. people's networks encouraging them to not vaccinate their kids, or go on a "cleanse" or what-have-you.

Her strategy is quite reasonable for someone with a rare or hard to diagnose disease which most doctors have never seen or even know about. There is a decent chance that there is someone out there who has the disease and give useful disease.

Case in point, my GF. She has been suffering for 10 years with a broad spectrum of symptoms: pain that moves around, extreme skin sensitivity, migraines, chemical sensitivity so severe that a whiff of perfume can make her sick for days. The usual recommended treatment from doctors was antidepressants or anti psychotics which make things much worse. Or go see a psychiatrist. Or maybe its fibromyalgia or some other disease du jour. Finally two doctors independently ordered MRIs that covered her from head to butt, her complete spine. They discovered a syrinx in her spine that caused arachnoiditis[1]. There is no cure, although Thalidomide(!!) may be a possible treatment. The point: persistence on the internet allowed her to educate herself about the manifestations of her problem to find the specialists that found the problem. Sadly, her problem was probably caused by an injury from having received spinal anesthesia some time back.

Another story for another time is how I had to beat the doctors at Stanford Hospital into a diagnose of malaria for my daughters even though it was well beyond the 30 day incubation period.

[1] no spiders involved at all.

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

#27

Post by rektide »

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 network, the collective knowledge, it's connecting to the right individuals.[1]

[1] http://lens.blogs.nytimes.com/2011/06/22/world-war-ii-myster...

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

#28

Post by VladRussian »

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 following logic also may be applied - they went to ER on the 3rd something day as a result of FB suggestions, while the search on Google directs to 911 immediately. So did the FB help? Or may be wasting time on FB diverted the time and attention from the more effective information search activities?

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

#29

Post by Mz »

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…

Actually, as a former homemaker who was routinely made to feel like an idiot by doctors and often felt like showing up at the hospital with a list of my academic credentials stapled to my lapel, my read on it is a little different. It looks to me like one of the big things was not the diagnosis per se but shoring up her confidence to stand up for her child and insist on being taken seriously. In addition to the excerpt below, earlier in the article she indicates her spouse was dismissing it as nothing.

I called my family doctor and told him I was heading to the hospital. "I just have a Spidey sense," I said, "that he's really sick." Not a lie, but not the whole truth, either, though what was I going to say? Three of my Facebook friends think my kid has an extremely rare childhood auto-immune disorder which I just read about on Wikipedia, and since they all contacted me after I posted a photo of him on my wall, I'm going? It seemed … wrong! Reactionary. And yet as much as I wanted to be my usual mellow self, the immediacy of the Facebook feedback was enough to push me out the door.

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

#30

Post by epynonymous »

Mz wrote: post #21
epynonymous wrote: post #16

Earlier quoted context omitted.

btw this is an invitation for lawyers or legal experts to prove me wrong so i can go build this. i personally found a need for this type of site a while back for myself, of course i would take each person's feedback with a (larger) grain of salt and still consult my doctors.

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 be harmed by something that i've done, especially if the goal is to help. and anything that gets big, even if it's non-profit would be a target for litigation.

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