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Thu Aug 22, 2019, 11:43 PM

Diagnosis: What if social media could save lives?

From The New York Times Column

Based on Dr. Lisa Sanders’ popular column in The New York Times Magazine, Diagnosis follows various patients on their respective journeys toward finding a diagnosis, and potentially a cure, for their mysterious illnesses. By combining the power of global crowdsourcing, social media, and established medical expertise, each case is untangled with illuminating new insights that had previously eluded doctors. From award-winning executive producers Scott Rudin, Simon Chinn and Jonathan Chinn, and in association with The New York Times, Diagnosis explores the life-changing impact of receiving a diagnosis for individuals who’ve been searching for answers, and the healing that comes with connecting with others who can empathize with their experiences. Only on Netflix August 16.



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Reply Diagnosis: What if social media could save lives? (Original post)
Kind of Blue Aug 2019 OP
mopinko Aug 2019 #1
Kind of Blue Aug 2019 #2
mopinko Aug 2019 #4
Kind of Blue Aug 2019 #7
customerserviceguy Aug 2019 #3
mopinko Aug 2019 #5
customerserviceguy Aug 2019 #6
mopinko Aug 2019 #9
Kind of Blue Aug 2019 #10
customerserviceguy Aug 2019 #11
Kind of Blue Aug 2019 #12
Kind of Blue Aug 2019 #8

Response to Kind of Blue (Original post)

Thu Aug 22, 2019, 11:51 PM

1. oh man oh man.

i have some crazy shit, and my youngest kid has more crazy shit that docs cant figure out than would fit in a school bus.

it's all gotten so complex. i'm not sure most docs even have their own specialties down. and new shit happens all the time.

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Response to mopinko (Reply #1)

Thu Aug 22, 2019, 11:56 PM

2. I'm so sorry, mopinko.

Do you think that you might contact Dr. Lisa Sanders? Besides writing the column and overseeing the individual process, I haven't checked out anything else about how she goes about it or whether she has something set up for reaching out to others on our own.

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Response to Kind of Blue (Reply #2)

Fri Aug 23, 2019, 12:50 AM

4. she just did some tests that might finally nail down at least one thing.

she has been suspected of having porphyria. she has done urine tests, biopsies, had lab results that only point to that. but apparently some people only test positive when it is active, and so far they havent caught it. (tho one set of 24 urine samples was sent to mayo, but not packed properly. for some reason it got reported out as negative.)
she probably also has ehlers-danlo, but it is the lesser type that is just now being studied and understood.

i will mention it to her. wapo has a similar column, but i dont know anything about the writer or where she gets her stories.

i have a sneaking suspicion that my ex and i had a genetic incompatibility. w each kid, i got sicker, and each kid had more bizarro stuff than the last.

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Response to mopinko (Reply #4)

Fri Aug 23, 2019, 11:47 AM

7. Yeah, in the first story, the young lady's parents each had a super rare

recessive gene that caused her disease.

I hope that a diagnosis for your children is coming soon.

As far as Dr. Sanders, a NYT article says, "In one of her earliest pieces for The Times, Dr. Sanders wrote about her own grief-filled efforts to diagnose her alcoholic sister’s cause of death, to get an answer."

It also goes on to say that she was an Emmy Award winning journalist before switching to medicine. Her Yale biography says that she is the inspiration and was the consultant for a show called "House," that I haven't seen.

https://www.nytimes.com/2019/08/16/reader-center/diagnosis-tv-netflix.html

https://medicine.yale.edu/profile/lisa_sanders/

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Response to Kind of Blue (Original post)

Fri Aug 23, 2019, 12:37 AM

3. You mean instead of ruining them?

That seems to me to be a bit like asking for a cure from poison. I avoid social media (except for here, of course) and I'm sure I'm healthier for it.

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Response to customerserviceguy (Reply #3)

Fri Aug 23, 2019, 12:51 AM

5. you have no idea what it is like to need an answer.

i am sure this could change a llooooottt of lives.

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Response to mopinko (Reply #5)

Fri Aug 23, 2019, 12:52 AM

6. I just know

about all the people who are obsessed by social media, look at the number of young people who take their own lives over silly shit posted online about them.

We'd have been far better off had social media not been invented.

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Response to customerserviceguy (Reply #6)

Fri Aug 23, 2019, 11:59 AM

9. well thank your lucky stars. and know this-

dont talk to people w chronic health problems about how you stay healthy. you have no idea what it is like, and all you are is lucky.

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Response to customerserviceguy (Reply #6)

Fri Aug 23, 2019, 12:03 PM

10. I'm sure people who've found help thru social media would strongly disagree as

do I.

My family and I have had different health-related experiences with just word of mouth before social media, talking to people that saved my life years ago and led to early Asperger diagnosis of my youngest sister that no one - not even her pediatrician(s) - heard of a little over 40 years ago. It put her on an incredibly wonderful and different life trajectory than so many unfortunate adults her generation and before with the syndrome.

So I think it's wonderful that Dr. Sanders is using social media for the greatest of good, caring for each other.

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Response to Kind of Blue (Reply #10)

Fri Aug 23, 2019, 12:06 PM

11. Hey, if they

can beat that sword into a plowshare, then I'm all for it. I'm sure there are specific groups that deal with an illness or disability where people find others who help with advice. But general social media, like Facebook, Twitter, Instagram, etc. are a part of the problem, not the solution.

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Response to customerserviceguy (Reply #11)

Fri Aug 23, 2019, 12:12 PM

12. Then I don't understand your need to inject such downers into

an aspect of social media when you know that's not what is being presented and know that there are all types of groups that help each other

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Response to customerserviceguy (Reply #3)

Fri Aug 23, 2019, 11:49 AM

8. Well, yeah. That's what the doctor and documentary series is about.

And here's to your continuing good health

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