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When our daughter was born with a rare life threatening condition my wife used SciHub to read articles about her condition. While the doctors had merely skimmed

by wincy 6y ago

When our daughter was born with a rare life threatening condition my wife used SciHub to read articles about her condition. While the doctors had merely skimmed the pages, my wife pored over them and found a suggestion of using a particular drug. After asking five different doctors about it, one finally agreed to prescribe it. It was strange how reticent doctors were to prescribe something and instead just told us she was going to die. If she’s believed to be terminal anyway, why not prescribe a relatively well known drug and see if it helps? I’m happy to say our daughters prognosis has improved greatly since she started this treatment. Without SciHub she might not still be with us.

breck 6y ago
This is an incredible and inspiring story. Would love to read more. Could I connect you with some journalists? My contact info is in my profile.
- wincy 6y ago
  Sure, my wife loves talking about her (it was mostly her, honestly) struggle to get the best care for our daughter, even at a “good” children’s hospital, I’ll send you an email.
- f430 6y ago
  make sure to post the article here when you finish writing it or a video.
- reader345611 6y ago
  Wish it's possible to publish user 'eloff' 's story above too if he/she has no problem with it.
maximente 6y ago
wow, vanilla comment but this is just really inspiring. kudos to her and best wishes to y'all going forward.
- boogies 6y ago
  I’ve wanted to give comments multiple upvotes before, but this story makes me wish HN had some sort of ‘super favorite’. #PiracySavesLives
  - wincy 6y ago
    At first blush I laughed at the hashtag, but it’s not too far from the truth. With the a la carte model of $30 a paper there is no way she could have read the literature. My wife would read the papers slowly and look up words as necessary. We read about a surgery that could potentially help our daughter, which the head of neurosurgery declined to do. We then said we’d take her to another children’s hospital (it turns out our insurance actually wouldn’t have covered that, but we didn’t know we were bluffing) and he begrudgingly agreed to perform the surgery. Had to get the expert who is a professor at Washington University to give a second opinion recommending surgery before it happened. Most of the doctors really didn’t like my wife, there are notes about her obstinance in our daughters file. But our daughter is doing well, and I’m glad I married someone so doggedly persistent.
    - jacquesm 6y ago
      Elsevier could make a lot of goodwill by adding a 'compassionate support required' checkbox on their download pages.
  - nitrogen 6y ago
    There is a "favorite" link which adds a comment to a public list of favorite comments on your profile.
- wincy 6y ago
  Thank you! She’s doing great, at six months the doctors said she wouldn’t make it to a year. But she is two now and her retired engineer great grandfather built her a little custom wheelchair that affords her a lot more freedom and mobility. At first she’d only go on the wood floors but has gotten stronger and wheels around the carpet now too. She has a five year old sister and they play together all the time.
hndudette2 6y ago
> After asking five different doctors about it, one finally agreed to prescribe it. Were the other four too lazy/orthodox to read the papers you're referencing? Or they read the papers and still thought it wasn't a good idea? I'm going to presume that the former is the case, unfortunately.
- arp242 6y ago
  Or didn't want to take the risk of using a somewhat experimental medicine (perhaps justifiably so, I don't know the details), or maybe the evidence is still promising but otherwise still very thin. Or they just didn't have the time to really research it as they also had dozens of other patients. There could be any number of reasons; without more details, I think it's quite a leap to immediately assume they're "lazy/orthodox to read the papers".
  - wincy 6y ago
    The evidence is thin because there’s very few children with the condition. A good number of them die by holding their breath. Very scary. It’s a complication of an already rare disorder. The medication has been around since 1966 though, it’s clonidine/catapres. The first doctor she mentioned it to just rudely corrected her on the pronunciation rather than give any actual feedback on whether or not it could help. I think you’re absolutely correct about having dozens of other patients. My wife wrote a long email, that was forwarded to the doctors, citing various articles with links to the medical journals and the doctors couldn’t thank her enough for it. It wasn’t until that happened that someone prescribed the medication for her.
  - jjoonathan 6y ago
    It's quite a leap unless you have worked extensively with doctors before and seen the behavior first hand too many times to count. I get why it happens: they have to deal directly with patients who 99% of the time are not research capable and if they claim to be research capable what they really mean is that they've been sharing conspiracy theories on facebook. Doctors build defense mechanisms against the nonsense (authoritative tone, dismissive attitude) that grate on academic sensibilities. They can be slow to come around but eventually they usually do.
absolutelyrad 6y ago
I'm so happy for you! There's a company that is not public but working in this space, I cannot recall it's name. They use NLP to diagnose patient condition by ingesting raw information/text from medical books/papers. You describe how you feel and any other information that you have in an article, and it gives out possible conditions and prescription. AFAIK, they still recommended that you go to the doctor, but you could use it as an extra to check the diagnosis yourself. But their point was they have all the data coming out in new papers, and the system studies it constantly and is always kept up.
- deleted 6y ago
  [deleted]
- vlovich123 6y ago
  What’s the company?
gmt2027 6y ago
There was a talk about medikanren which can make deductive connections from a database of facts extracted from medical research. The speaker used it to find a treatment for his son's rare genetic disorder. https://www.youtube.com/watch?v=Yval98eOyZc https://www.youtube.com/watch?v=Yval98eOyZc http://minikanren.org/workshop/2020/minikanren-2020-paper10.pdf http://minikanren.org/workshop/2020/minikanren-2020-paper10....
- andredz 6y ago
  I've spent many hours reading Matt Might's website: http://matt.might.net/articles/ http://matt.might.net/articles/
eloff 6y ago
Thank you for sharing an inspiring story. When my mom was diagnosed with breast cancer my dad poured over literally hundreds of medical papers to determine the best course of action. I believe he saved her life. Scihub was instrumental in that. I helped a little in checking and challenging his conclusions. I think it's unlikely she would have had as good an outcome if we'd just listened to the doctors. My conclusion is if you want the best medical care be sure to do your own research and talk to many doctors about your findings and treatment options. Do not blindly trust the medical community. They are years behind the current state of knowledge in their field and just do not have the time and energy to spend per patient to get the best outcome.
- wincy 6y ago
  My wife has the sharp mind of an engineer, but she was humble about reading the literature slowly and deliberately. She knows she’s not a doctor. However she was firm in asking the doctors questions about what she read, getting clarifications and not being satisfied with answers like “this is how it’s done” and would keep asking until things were explained. The doctors thought she was just obstinate against any procedure which was frustrating. She used the doctors as a resource, then made the most informed decision she felt she could. We got second opinions from experts at other children’s hospitals. I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.
- anonAndOn 6y ago
  > My conclusion is if you want the best medical care be sure to do your own research I would alter this slightly to "have a trusted advocate do research and talk to many doctors". The person with the life threatening diagnosis may not be in the right frame of mind to advocate for the best treatment. Should you ever find yourself in the hospital, having a capable ally alongside you can make a world of difference.
  - 6y ago
kaskakokos 6y ago
Wow! this touched me, it's wonderful and I am happy for you.
TheRealSteel 6y ago
I myself have used SciHub this very week to understand a medical condition that is taking over my life, before seeing a very expensive private specialist soon. SciHub gave me access to valuable information that helped me understand my condition and the right questions to ask my doctor next week.
raverbashing 6y ago
> It was strange how reticent doctors were to prescribe something and instead just told us she was going to die. If she’s believed to be terminal anyway, why not prescribe a relatively well known drug and see if it helps? Because according to EBM nothing exists and nothing works unless it's proven with a big RCT. Yes, it's ridiculous. Especially as in your case.
- dredmorbius 6y ago
  EBM: evidence-based medicine? RCT: randomized controlled trial?
f430 6y ago
How is that doctors miss this? Is it because they don't want to risk their license?
pessimizer 6y ago
SciHub got me out of a bad procedure (serious enough that I'd be put fully under), or rather a series of bad procedures. Reading all of the papers on my condition gave me another effective option that not only 1) avoided the procedure, but also 2) if I had gotten the procedure, it's the kind of procedure that would have to be repeated every few years when the symptoms reoccurred. Turned out that a far cheaper, less arduous treatment could hold off symptoms indefinitely. I'm grateful to Elbakyan every day, and am also long past when I would have probably had a second or third occurance.
TheOperator 6y ago
I'm not quite in that rough shape but I have several medical conditions and for years I just stared at summaries and "Pay just $40 to read this article" and the article would be a freshman level essay about the sociological implications of illness. Now that sci-hub exists medicine is accessible. Anybody who wants to take it down is declaring war on the sick and disabled. Shut down Elsevier instead because they're an organization of long corrupt middlemen.
jacquesm 6y ago
Just this one story justifies the existence of SciHub, and I don't doubt that there are 1000's to match.
3131s 6y ago
My mom bought thousands of dollars worth of journal articles so that she could self-diagnose a serious lung condition that doctors had missed. They ended up studying her case at the Mayo clinic. Alexandra Elbakyan is a hero.

by wincy 6y ago

breck 6y ago

This is an incredible and inspiring story. Would love to read more. Could I connect you with some journalists? My contact info is in my profile.

wincy 6y ago
Sure, my wife loves talking about her (it was mostly her, honestly) struggle to get the best care for our daughter, even at a “good” children’s hospital, I’ll send you an email.
f430 6y ago
make sure to post the article here when you finish writing it or a video.
reader345611 6y ago
Wish it's possible to publish user 'eloff' 's story above too if he/she has no problem with it.

maximente 6y ago

wow, vanilla comment but this is just really inspiring. kudos to her and best wishes to y'all going forward.

boogies 6y ago
I’ve wanted to give comments multiple upvotes before, but this story makes me wish HN had some sort of ‘super favorite’. #PiracySavesLives
- wincy 6y ago
  At first blush I laughed at the hashtag, but it’s not too far from the truth. With the a la carte model of $30 a paper there is no way she could have read the literature. My wife would read the papers slowly and look up words as necessary. We read about a surgery that could potentially help our daughter, which the head of neurosurgery declined to do. We then said we’d take her to another children’s hospital (it turns out our insurance actually wouldn’t have covered that, but we didn’t know we were bluffing) and he begrudgingly agreed to perform the surgery. Had to get the expert who is a professor at Washington University to give a second opinion recommending surgery before it happened. Most of the doctors really didn’t like my wife, there are notes about her obstinance in our daughters file. But our daughter is doing well, and I’m glad I married someone so doggedly persistent.
  - jacquesm 6y ago
    Elsevier could make a lot of goodwill by adding a 'compassionate support required' checkbox on their download pages.
- nitrogen 6y ago
  There is a "favorite" link which adds a comment to a public list of favorite comments on your profile.
wincy 6y ago
Thank you! She’s doing great, at six months the doctors said she wouldn’t make it to a year. But she is two now and her retired engineer great grandfather built her a little custom wheelchair that affords her a lot more freedom and mobility. At first she’d only go on the wood floors but has gotten stronger and wheels around the carpet now too. She has a five year old sister and they play together all the time.

hndudette2 6y ago

> After asking five different doctors about it, one finally agreed to prescribe it. Were the other four too lazy/orthodox to read the papers you're referencing? Or they read the papers and still thought it wasn't a good idea? I'm going to presume that the former is the case, unfortunately.

arp242 6y ago
Or didn't want to take the risk of using a somewhat experimental medicine (perhaps justifiably so, I don't know the details), or maybe the evidence is still promising but otherwise still very thin. Or they just didn't have the time to really research it as they also had dozens of other patients. There could be any number of reasons; without more details, I think it's quite a leap to immediately assume they're "lazy/orthodox to read the papers".
- wincy 6y ago
  The evidence is thin because there’s very few children with the condition. A good number of them die by holding their breath. Very scary. It’s a complication of an already rare disorder. The medication has been around since 1966 though, it’s clonidine/catapres. The first doctor she mentioned it to just rudely corrected her on the pronunciation rather than give any actual feedback on whether or not it could help. I think you’re absolutely correct about having dozens of other patients. My wife wrote a long email, that was forwarded to the doctors, citing various articles with links to the medical journals and the doctors couldn’t thank her enough for it. It wasn’t until that happened that someone prescribed the medication for her.
- jjoonathan 6y ago
  It's quite a leap unless you have worked extensively with doctors before and seen the behavior first hand too many times to count. I get why it happens: they have to deal directly with patients who 99% of the time are not research capable and if they claim to be research capable what they really mean is that they've been sharing conspiracy theories on facebook. Doctors build defense mechanisms against the nonsense (authoritative tone, dismissive attitude) that grate on academic sensibilities. They can be slow to come around but eventually they usually do.

absolutelyrad 6y ago

I'm so happy for you! There's a company that is not public but working in this space, I cannot recall it's name. They use NLP to diagnose patient condition by ingesting raw information/text from medical books/papers. You describe how you feel and any other information that you have in an article, and it gives out possible conditions and prescription. AFAIK, they still recommended that you go to the doctor, but you could use it as an extra to check the diagnosis yourself. But their point was they have all the data coming out in new papers, and the system studies it constantly and is always kept up.

deleted 6y ago
[deleted]
vlovich123 6y ago
What’s the company?

gmt2027 6y ago

There was a talk about medikanren which can make deductive connections from a database of facts extracted from medical research. The speaker used it to find a treatment for his son's rare genetic disorder. https://www.youtube.com/watch?v=Yval98eOyZc https://www.youtube.com/watch?v=Yval98eOyZc http://minikanren.org/workshop/2020/minikanren-2020-paper10.pdf http://minikanren.org/workshop/2020/minikanren-2020-paper10....

andredz 6y ago
I've spent many hours reading Matt Might's website: http://matt.might.net/articles/ http://matt.might.net/articles/

eloff 6y ago

Thank you for sharing an inspiring story. When my mom was diagnosed with breast cancer my dad poured over literally hundreds of medical papers to determine the best course of action. I believe he saved her life. Scihub was instrumental in that. I helped a little in checking and challenging his conclusions. I think it's unlikely she would have had as good an outcome if we'd just listened to the doctors. My conclusion is if you want the best medical care be sure to do your own research and talk to many doctors about your findings and treatment options. Do not blindly trust the medical community. They are years behind the current state of knowledge in their field and just do not have the time and energy to spend per patient to get the best outcome.

wincy 6y ago
My wife has the sharp mind of an engineer, but she was humble about reading the literature slowly and deliberately. She knows she’s not a doctor. However she was firm in asking the doctors questions about what she read, getting clarifications and not being satisfied with answers like “this is how it’s done” and would keep asking until things were explained. The doctors thought she was just obstinate against any procedure which was frustrating. She used the doctors as a resource, then made the most informed decision she felt she could. We got second opinions from experts at other children’s hospitals. I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.
anonAndOn 6y ago
> My conclusion is if you want the best medical care be sure to do your own research I would alter this slightly to "have a trusted advocate do research and talk to many doctors". The person with the life threatening diagnosis may not be in the right frame of mind to advocate for the best treatment. Should you ever find yourself in the hospital, having a capable ally alongside you can make a world of difference.
- 6y ago

kaskakokos 6y ago

Wow! this touched me, it's wonderful and I am happy for you.

TheRealSteel 6y ago

I myself have used SciHub this very week to understand a medical condition that is taking over my life, before seeing a very expensive private specialist soon. SciHub gave me access to valuable information that helped me understand my condition and the right questions to ask my doctor next week.

raverbashing 6y ago

> It was strange how reticent doctors were to prescribe something and instead just told us she was going to die. If she’s believed to be terminal anyway, why not prescribe a relatively well known drug and see if it helps? Because according to EBM nothing exists and nothing works unless it's proven with a big RCT. Yes, it's ridiculous. Especially as in your case.

dredmorbius 6y ago
EBM: evidence-based medicine? RCT: randomized controlled trial?

f430 6y ago

How is that doctors miss this? Is it because they don't want to risk their license?

pessimizer 6y ago

SciHub got me out of a bad procedure (serious enough that I'd be put fully under), or rather a series of bad procedures. Reading all of the papers on my condition gave me another effective option that not only 1) avoided the procedure, but also 2) if I had gotten the procedure, it's the kind of procedure that would have to be repeated every few years when the symptoms reoccurred. Turned out that a far cheaper, less arduous treatment could hold off symptoms indefinitely. I'm grateful to Elbakyan every day, and am also long past when I would have probably had a second or third occurance.

TheOperator 6y ago

I'm not quite in that rough shape but I have several medical conditions and for years I just stared at summaries and "Pay just $40 to read this article" and the article would be a freshman level essay about the sociological implications of illness. Now that sci-hub exists medicine is accessible. Anybody who wants to take it down is declaring war on the sick and disabled. Shut down Elsevier instead because they're an organization of long corrupt middlemen.

jacquesm 6y ago

Just this one story justifies the existence of SciHub, and I don't doubt that there are 1000's to match.

3131s 6y ago

My mom bought thousands of dollars worth of journal articles so that she could self-diagnose a serious lung condition that doctors had missed. They ended up studying her case at the Mayo clinic. Alexandra Elbakyan is a hero.