In 2015, my wife Elizabeth was going through a life changing event where her body was attacking itself, landing her in the hospital with critically low blood levels and had to be emergency transfused.
My wife’s body was attacking her blood, hair & skin. Liz couldn’t eat meals or take medicine because she was reacting badly to nearly every side effect on the label.
I started thinking about blockchain + AI back then while trying to solve my wife’s medical mystery. In 2016 I wrote this reddit piece which got some traction at the time.
This concept of a “crowd swarm trained machine learning blockchain” eventually evolved into a more sensible machine learning marketplace that my friend Gavin started called Openmined, which Fred Ehrsam wrote about here.
In my research to find help or my wife, I was introduced to Courtney Runyon via Facebook messenger, she was completely healthy at the time.
It took my wife and I about 2 years to get a diagnosis of CVID, but during that time, I wanted to send Elizabeth to a women's health retreat, which Courtney ran.
In a cruel twist of fate, Courtney herself developed and has been struggling with a rare disease. I’ve been following Courtney’s story for a year now.
She’s been documenting her health struggles with getting a diagnosis for a rare disease called CIDP, a “zebra” autoimmune disease like my wife’s which attacks her myelin causing loss of motor skills and autonomic nerve disruption.
Courtney’s symptoms onset fast last year, she and her family tried everything to get an accurate diagnosis.
Along the way she lost control of her voice and arms, she was typing Facebook updates from the hospital bed with her nose!
Like Courtney, my wife Liz eventually got her diagnosis after seeing 7–8 different specialist, doing litres of bloodtests and a full spectrum of tests. We started treatment in 2016 but not before she lost all of her hair and had debilitating head to toe skin rashes and chronic pain.
Thankfully as of Jan 2018, the treatment has been helping and my wife is in remission now, her hair has grown back and her skin and blood problems have cleared up.
I don’t know how women like my wife and Courtney can cope and get through such hardships — I’m not sure how I would deal with similar struggles.
My wife went through one of the worst things a woman can mentally go through — yet she remained a positive example of strength for my daughter, and still managed to keep a sense of normalcy around the house.
It was hard for her mentally and physically.
During that time she acted in a musical, wrote a children’s book, wrote 100 pages for a really great romance-adventure-revenge novel, completed a university writing course, and kept her role as CEO of the house taking care of my daughter and I. (Thankfully we had help from family members when things got really bad, or when we had to stay in the hospital.)
Currently things look great for us — thanks partly to the financial security my early 2011 investment in Bitcoin has brought us, but life with a rare disease is still a struggle — we wonder if the disease will come back, what will happen next time, etc. We haven’t been travelling much because if anything happens in another country, it would potentially be disastrous.
Courtney has been getting a similar treatment as my wife and her symptoms have been starting to clear up. She’s been relearning how to walk. She regained control of her arms, and her voice has come back.
She’s been consistently making inspirational videos from the hospital or rehab facility, being a great example for other people struggling with rare diseases.
For every Liz and Courney there’s a thousand other women (and men and children) struggling with rare diseases.
This is why I’m taking a portion of the Bitcoin and crypto wealth I’ve managed to acquire over the last 5 years and investing in projects like Doc.ai
Artificial Intelligence is going to solve these problems.
There WILL be a time in the near future where Courney would not have had to be wheelchair bound, where my wife would not have had to lose all of her hair.
These rare diseases can be diagnosed 99% faster and more accurately than human doctors.
The current lag time is 8 years to diagnosis for “zebra” diseases and in most cases after 8 years with undiagnosed autoimmune diseases, quality of life significantly deteriorates and takes a long time to rebuild back to normal — if the damage was not too great.
With AI assisted faster diagnosis, people with zebra diseases can have longer life expectancies and better quality of life because they get treated before it gets to worst case scenario like with Courtney and Elizabeth.
Blockchain technology & AI allows users to share their “omics” data … Their genes, blood test results, medical documents, etc to allow data scientists to start studying these pools of data to train their AI models.
With projects like Doc.ai, users actually get rewarded for their valuable rare data. Think of that — medical companies and insurance companies want to find cures for these diseases because then they can profit from patents, treatments, etc.
Typically until now, you as the user with the valuable rare data have not been able to participate in the financial rewards. Now we can.
Using the same model as Kaggle, Doc.ai users earn NRN tokens because they have valuable rare data. These users can pool their data AND their money (cryptocurrency or dollars) to incentivize data scientists, doctors and medical students to work on finding faster diagnosis methods and cures.
This blockchain plus AI trained model stack aligns the incentives of users (patients), universities, pharmaceutical companies etc.
On behalf of my wife Elizabeth and Courtney, I’m going to donate 100% of any advisory NRN tokens in groups of $10,000 bounties on the Doc.ai platform when it launches to help incentivize data scientists to pay attention to these rare autoimmune diseases.
I’m very hopeful for the future of medicine and AI, I seriously think that we will be able to see a serious uptick in quality of life thanks to folks like Walter & Sam and the Doc.ai team.
Liz, you inspire me.