A Social Network for Crohn’s Disease – Crohnology (YC S12)(technologyreview.com) |
A Social Network for Crohn’s Disease – Crohnology (YC S12)(technologyreview.com) |
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.
Beddit looks interesting as well for sleep tracking: http://www.indiegogo.com/projects/beddit-automatic-sleep-and...
More passive quantified self stuff, please!
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.
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.
Secondly, I must say that I find diet is extremely important when you have IBD. Now, I'm not about to go off of all my medication and grab some Vitamin B tablets, but I, like most patients, have trigger foods that will almost certainly cause me pain.
Additionally, past studies have shown enteral feeding to be extremely effective (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378894/), suggesting that diet is a major factor. Again, fecal transplants are widely successful (http://journals.lww.com/jcge/Abstract/2003/07000/Treatment_o...) and the FDA is reviewing fecal transplants as a viable treatment option. Again, if fecal transplants do work, then a necessary cause of crohns/colitis could be an imbalance of gut bacteria, caused by poor diet/antibiotics/preservatives
Also treatments are not always the same, for example in Europe they sometimes treat Colitis with nicotine (if the patient is a smoker or has recently quit), but doing so with a Crohn's patient would have a negative effect.
I agree that the steroid use is typically the same (and asacol), but Colitis seems less affected by diet than Crohns, if you have a severe case the only help is medication and diet has little to no effect outside abrasive materials.
I'm not being negative about the site, I do think it is great that people can come together as a community, I just had some concerns.
I've known Sean for a few years and operate a (smaller) disease-based Q&A community as well with 2,500 members for Ankylosing Spondylitis (AS) - http://answers.ankylosing.org
I created it when my girlfriend was diagnosed, dismayed that Google yielded mostly information from WebMD and pseudo-FAQ sites from big pharma.
Where networks like Crohnology shine is in connecting others who share the same pains, frustrations with doctors, experiences with medications, comforts, and very personal conversations about the impact on sex and relationships with their disease.
And guess what, when someone puts out misinformation, that community hops on the offender like white on rice, even emailing me directly (can you ban them!?).
I've seen few social networks truly as tight-knit as disease communities and that's where Sean focuses his energy (whereas mine is a small side project). They're the only place to interact with a cohort that really "gets me" and they take pride in helping others to an amazing degree.
Finally, in reference to a doctor and the "first 5 minutes" comment - the reality is they only give you 5 minutes, and when you complain about a new pain, symptom, you'll often get "Yup, that's Crohn's/AS/etc." Then they'll write you a script for a drug where the ONLY real place to get good information on the side-effects/positive-effects are through networks like ours.
edit: I still always manage to spell Crohn's wrong
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
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. :)
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!
Love the idea! It's nice to see that YC gives these niche greater good startups a chance.
Seriously, is it really a disease or a sucker game?