
A Social Network for Crohn’s Disease – Crohnology (YC S12) - seanahrens
http://www.technologyreview.com/news/518886/patients-take-control-of-their-health-care-online/
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frio
I suffer from UC, and a cavalcade of related illnesses. I honestly believe
that tools like this are the future.

Particularly for me, I've noticed one of the problems with long term, chronic
illness, is that you lose perspective -- an hour in the bog might seem like
you're doing better than yesterday (and after 2 years, yesterday is "normal"),
but for a normal person would imply it's perhaps time to see a doctor. I've
hence come to rely quite closely on quantified self type stuff -- tracking how
I'm doing on observable, concrete metrics -- so that I can see from a rational
perspective that I've crossed a line. I've been building tooling in my spare
time to give me d3 graphs and whatnot of my health, rather than server
metrics.

I believe that kind of passive data gathering (active's no good, because
people forget, lie, etc.) is going to become crucial for monitoring health,
preventing illness, and improving patient outcomes.

Which is a long way of saying: awesome. This is truly transformative. I'll be
signing up shortly.

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tlrobinson
Agree 100% about passive vs. active data gathering. I can't even remember to
charge/wear a Fitbit/FuelBand/Up/whatever every day, so I'm looking forward to
the apps iPhone 5S's "motion coprocessor" enables.

Beddit looks interesting as well for sleep tracking:
[http://www.indiegogo.com/projects/beddit-automatic-sleep-
and...](http://www.indiegogo.com/projects/beddit-automatic-sleep-and-wellness-
tracker-turn-your-bed-into-a-smart-bed)

More passive quantified self stuff, please!

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rdl
I wish there were a passive food-ingestion tracker.

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wyck
I'm am concerned by this.

Specifically with this linked site, Crohns and Colitis are not the same
diseases and have different treatments, yet the data is lumped together, this
is irresponsible.

Secondly the masses are now always right, this can easily fall into a movement
of bad advice and skewed product ratings without oversight by the maintainers,
actual doctors, and research with peer review.

For the record I've done a lot of research on Colitis (peer journals,
specialists), there is nothing in the link that provides anything that a
doctor isn't going to tell you within the first 5 minutes medication wise. I
have had a friend die from a Colitis flare up, and 2 others with severe cases,
one of whom is in the hospital right now, to suggest that taking Vitamin-B and
not drinking beer will help is to be honest, ridiculous.

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seanahrens
It's an iterative and building process for us to get where we want to go with
Crohnology. The start is less scientific, but as we build better software,
with larger N, and bring on the involvement (and attract the attention of)
more researchers and doctors, things will build their rigor.

If you believe in the vision, of gathering patients together to collect and
learn from more real-world data points, in concert with oversight by
researchers, then the current implementation is, well, just the current
implementation to get us to that end goal, of a more engaged, globally-
distributed means of learning from patients as they live and treat their
disease.

Medical science is fundamentally the study of how inputs to a body relate to
outputs of the body (in the scope of treating disease). If we can collect a
continuity of these data points in the real-world, among a global populous,
you have the potential to understand the disease in ways never before
possible.

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carbocation
In medicine we lump UC and Crohn's because they are both inflammatory bowel
diseases. I think it's entirely reasonable if you do the same (at least /
especially initially).

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ajuc
I've been diagnosed with UC 10 years ago, only recently doctors changed their
diagnosis to Crohn's disease (btw it's called Leśniewski-Crohn disease here).
Apparently it's hard to distinguish, and I think it's good to keep them
together.

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nulluk
With both myself and my partner having Crohns we have found a lot of value it
Crohnology and its absolutely an amazing idea, simply for the community thats
grown around it.

However my single annoyance is all the treatments are display by brand name
and over here in the UK medicine is generally never referred to by its brand
name, meaning it was extremely difficult to input my past treatments without a
lot of googling

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gametheoretic
Sean! I love you!

My sister, 14 next month, was diagnosed ~18 months ago with UC. Everything has
been such a roller coaster for her, it's been unbearable. On and off this and
that medication, etc, etc - after reading through crohnology.com/testimonials,
it seems like you guys really get it. :)

Do you have any tips on how best to introduce her to the site? You and your
team, I glean from your Stanford talk, have made a real commitment to making
the site as friendly as possible (not in the usual "even dumb users will get
it" guruspeak sense, but _actually_ friendly - you know, in the "friend"
sense). So let me lean on you.

Right now, this month and last, is/has been such a critical time for her,
medically and, due to the nature of the illness, personally. She's inherently
super shy, so it took her a long time to open up with her first doctor and
start moving forward-- but he moved recently, and the new doc, well, just
ain't working out... But the thing is - and this is why I'm so fucking happy
you've made Crohnology! :) - she's also a very bright girl who knows the ins
and outs of the treatments she's going through. (And she does the social thing
online, has 50 apps on her phone, yada yada - picking up functionality will be
a non-issue.) So you see how, shy girl + a personal medical issue + C.com = 8
birds with one stone for her.

My single (hopefully ignorant) worry is that my sister, being 13 and shy, will
come on the site and think, 'This isn't my crowd.' Or something to that
effect. Please, please, please, tell me I'm being a big, dumb idiot and why,
or just point me somewhere that might be a good first link for her to visit,
or... anything! I know from your vids you've thought about this stuff in and
out!

Eternally Grateful,

Mike

P.S. - Commented here rather than on your site because I wasn't sure what the
policy on the undiagnosed barging in on the community was. Given the personal
nature of things, there's definitely an advantage to keeping things "members
only." That said, if you feel this discussion is better had in say, the
comments section of a post on C.com/blog, I'm happy to sign up and repost over
there. :)

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HillRat
Nice concept; I'm lucky that I've (knock on wood) been in remission for the
past few years, but I nearly died of the damned thing thanks to a series of
misdiagnoses. Luckily, my (then-future) father-in-law has UC, so my wife was
able to recognize my symptoms as an autoimmune condition and prompt me to get
more effective help.

Though more info is out there now, at the time everything I learned about
Crohn's/UC came from medical textbooks and journals, which is not exactly a
scalable way to find out about your life-threatening illness. Something like
this definitely has the potential to bring a lot of value to people who are
suffering. Thanks for bringing it to life!

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csmatt
This reminds me of a Ted Talk I saw a while back that really stuck with me.
The guy's brother was diagnosed with something and he created a site for
others to post and track their treatments and also review others' treatments
and outcomes. I tried searching for it but can't find it.

Love the idea! It's nice to see that YC gives these niche greater good
startups a chance.

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Major_Grooves
Hi Sean! We met in Neu Odessa bar in Berlin earlier this year. I was the
"nearly-YC" guy from Scotland. Glad to see you are getting this out there now.
Good luck with it!

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juskrey
Nice picture! 4:15a "I was in pain level 8" 12:30p "I ate hamburger and fries"

Seriously, is it really a disease or a sucker game?

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Serow225
This looks awesome, I'm forwarding it to my mother who has Crohn's! Thanks :)

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moksha_medicine
The first thing I thought about was that dating site for people with colostomy
bags.

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moksha_medicine
Found it! [http://www.ostodate.com/](http://www.ostodate.com/)

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JoelAnair
Seems like a good place to shoot the shit.

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dataisfun
Well done Sean!

