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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsDiagnosis: 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 whove been searching for answers, and the healing that comes with connecting with others who can empathize with their experiences. Only on Netflix August 16.
mopinko
(70,023 posts)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.
Kind of Blue
(8,709 posts)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.
mopinko
(70,023 posts)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.
Kind of Blue
(8,709 posts)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 sisters 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/
customerserviceguy
(25,183 posts)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.
mopinko
(70,023 posts)i am sure this could change a llooooottt of lives.
customerserviceguy
(25,183 posts)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.
mopinko
(70,023 posts)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.
Kind of Blue
(8,709 posts)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.
customerserviceguy
(25,183 posts)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.
Kind of Blue
(8,709 posts)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
Kind of Blue
(8,709 posts)And here's to your continuing good health