A Social Network for Crohn’s Disease – Crohnology (YC S12)
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A Social Network for Crohn’s Disease – Crohnology (YC S12)
1–10 of 23 posts
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#2I 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.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#3I'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.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#4I 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…
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...
More passive quantified self stuff, please!
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#5I 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…
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... More passive quantified self stuff, please!
I wish there were a passive food-ingestion tracker.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#6Well done Sean!
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#7I'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 d…
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.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#8With 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
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#9The first thing I thought about was that dating site for people with colostomy bags.
Re: A Social Network for Crohn’s Disease – Crohnology (YC S12)
#10The first thing I thought about was that dating site for people with colostomy bags.
Found it! http://www.ostodate.com/