Crowdsourcing a cure for my brain cancer
November 1, 2012
Artist Patrick Lichty used Iaconesi’s MRI data to make a 3D model of his brain tumor and posted it on the website Thingiverse. So now anyone with a 3D printer and an Internet connection can reproduce it. Thanks to Lichty, Iaconesi’s tumor also exists in the virtual world Second Life. (Credit: Patrick Lichty/Thingiverse)
Digital artist Salvatore Iaconesi, an engineer, artist, hacker and 2012 TED fellow who teaches interaction and digital design at Sapienza University of Rome, Italy, hacked his medical records to put them online on his site artisopensource.net/cure in a global search for the best treatments, New Scientist reports.
What happened?
It’s been incredible. I have been able to become an expert in neurosurgery and neurology. Through this kind of complete openness, I could access thousands of people who have provided me with their knowledge, their skills, their testimonies, their life experiences. Roughly 60 neurologists, neurosurgeons and radiologists contacted me suggesting techniques for surgery and for treatment. They are even talking to each other.
Scans of your brain have inspired you and other artists in many ways. Tell me more.
There are lots of things going on: poems, texts, narratives. An electronic music collective in Palermo, Italy, did a performance with images of my cancer as their visuals. There is this wonderful American artist, Patrick Lichty, who built a sculpture of my brain and tumor in Second Life.
Comments (14)
by tedhowardnz
I was told in May 2010 that I had a 50% chance of living 5 months, and that there was nothing known to medical science that could alter that probability or remove the metastasized melanoma tumours from my liver.
I am now alive and well, with no known tumours.
I tried many things, all together, and the tumours went in 4 months.
I eased up on many things, and more tumours appeared.
I went back onto most things, and tumours stayed away.
I eased up on things one at a time, and when I stopped high dose vitamin C, tumour showed up.
I have kept to a strict vegan diet, and high dose vitamin C, and have had no more tumours over the last 18 months.
All my medical records are on my blogsite.
http://tedhowardnz.wordpress.com/about/
What I did, and why I chose those particular strategies in on another page
http://tedhowardnz.wordpress.com/cancer-treatment/
I offer it as information for all.
For me, it seems that radical change of diet and vitamin C is enough to keep cancer at bay.
That seems true for my particular biochemistry – it may help others.
I alive, when all doctors, cancer societies etc, had given up on me.
My biggest piece of advice, trust yourself. Don’t necessarily believe what any expert tells you (they are often wrong) and don’t entirely ignore them either.
Use your own intuition to evaluate what people tell you.
Believe in yourself.
Believe you can beat it, do what you can – however hard (and believe me, giving up meat, sugar, coffer, alcohol, all refined foods; in one hit, is not easy – mind and body object strongly, persistently, for months – you need to really want to live, you need to be stronger, and more persistent).
My undergrad training was in biochemistry, and I read voraciously for several weeks – everything, with an open mind.
I came out of that process seeing clearly the very negative incentives within our market based health and governance systems, that have little or no incentive to actually cure people, and huge incentives to keep people on expensive medications for the rest of their lives.
The entire system is systemically and intellectually corrupt (however many great individuals there may be within it).
And it is but a subset of the corruption engendered in society generally by the concept of money. And just to be clear, I am not talking about the use of money as a tool in the exchange of real goods and services, that has, and always will have, societal utility. What I am talking about is the pursuit of money in and of itself – via markets in Finance, ForEx, Stocks and bonds, derivatives; high speed trading etc – and the impact all of that has on governance at all levels. I am now very clear that this is the single greatest threat to human survival that now exists.
by DougW
Ted, It’s wonderful to hear that you are alive and well! My experience in the medical community is very similar, though admittedly not for a situation as dire as yours. My son has an incredibly rare short-stature syndrome that makes him one of the smallest people on the planet, and finding the right professionals and actually helping to steer them toward genetic research, diagnosis and treatments has been a huge effort championed mostly by the handful of parents who have children with this syndrome. I completely agree with your statement of neither completely trusting nor dismissing the ‘experts’ in the medical community.
As for your final 2 paragraphs, all too true. I had doctors advising me to keep my son on HGH (back when very little was known about it) even after it had been shown to be ineffective just to help them with their high-oncome studies. As we move into the future, I am afraid that ‘money’ will simply be replaced with ‘information’ as the primary method of gathering power. I hope we can prevent that from happening through the kind of information sharing outlined in this article!
by geekette
Whatever methods he uses, quality of life, stress, depression will also be issues… working with patients at Stanford Hospital, we found acupressure to be very helpful and the folks who underwent chemo/rad/surgery, even bone marrow stem cell transplant, usually halved their hospital stay, had fewer side effects, were smiling a lot more… In these types of situations, it matters greatly.
We put much of this online at http://www.21stcenturymed.org also in a paper that is available on pubmed but also on the website, its called Haptic Medicine.
Enjoy.
by ErikSMeyer
Of course, he still has brain cancer. Have a story like this ending with a cure? (Yes, I know it’s too soon, but getting lots of people to talk about your disease does not, in itself, necessarily help with the disease. It just gives people something new to talk about.)
Here we go:
“We live in a time when, thanks to the internet, the mythology has been destroyed that people are stupid and some things can be done only by professionals.”
If anything, the Internet has provided limitless proof of the credulity, stupidity and general uselessness of most people, not their intelligence. Most of what passes for content online is a combination of hucksterism and people chattering about things they’ve heard somebody else chattering about.
by joelayoung
Knowledge is power. Separating truth from fiction has always been the scientific goal. Sometimes the stupidest unfounded suggestion leads to the most profound discovery. Let us not stop suggesting, a great percentage of what we once considered truth was nothing but people claiming authority, ultimately proving to be untrue content and vice verse. Someone will see the difference and turn an ancient depiction of a crude helicopter into a stealth blackhawk helicopter. Who would have guessed.
by guest
Read Bill Henderson’s book : Cancer-free, a guide to gentle non toxic healing
by TED D. BEAR
Woe to those in dire circumstances who crowdsource their illness only to be inundated by spammers.
by high carbfoods
My thoughts about Crowdsourcing. Usually medical info is held private, now is in WWW wold. Really Crowdsourcing helped the cure or improvements in the quality of life substantiated by science needs validation. From a single study, could we all go for it?
by high carbfoods
Crowdsourcing at its best. This is solid evidence that besides business even, healthcare providers can learn and implement, pretty well for free, by simply suggesting their patients, open to the whole wide world. Thanks to the scientists who started the Internet to share scientific info amongst scientists in Geneva. Correct me if I wronged.
by John Elliott
Correction to first comment
Typo should read cancer nodule.
by John Elliott
The best treatment I know about is the Gold Nano cell particle injection straight into the Cancels nodule and then they shrink it with an infrared laser and then remove it after it has shrunk down. There is a Doctor in Germany who can do this but I do not recall his name or the Hospital whee he is located.
by Bob Smith
Heard that a doc at U of Alberta had surprising results with surgery and Sodium Dichloroacetate , http://en.wikipedia.org/wiki/Dichloroacetic_acid
by Bob Hanshaw
Flip the classroom–flip the doctor’s office: what a great way to stimulate your audience and inspire creativity!
by Gorden Russell
Yeah Bob, get all these great minds working together all over the world.