What do you do when the doctors have said, “There’s nothing more we can do?”
If you were godlike you’d wave your hand and say “It is fixed,” but you’re not, so you’re limited by existing knowledge (as are the docs) and by your ability to change existing knowledge, and your ability to improve what’s possible – to create something that’s never existed before.
What do you do?
A lot has changed in the past thirty years, and it’s a real problem that some people still think patients can’t create value. That last item – your ability to add to knowledge, to create something new – has changed dramatically because of the internet, and because so much information has become digitized, which makes it available for computerized tools.
It is a benighted mistake to not realize this and to thus be skeptical. It is unscientific. Examples from the book:
- Extreme athlete Kim Goodsell dug and dug and dug and eventually discovered the unifying genetic cause for her two rare conditions.
- No scientists had figured this out – she was enabled by the internet.
- Medical education: none. College degree: none. Motivation: extreme.
- Jill Viles is The Patient Who Diagnosed Her Own Genetic Mutation—and an Olympic Athlete’s (from The Atlantic). As a college freshman pre-internet, at first she used books (and more recently the Web) to discover extraordinary things about her genetics – things no scientists had found.
- Medical education: none. College degree, at first: none. Motivation: extreme.
- English Marfan Syndrome patient Tal Golesworthy used digital scan data and engineering tools to develop a successful new surgical treatment for the life-threatening aortic problems experienced by Marfan patients. It’s been used on hundreds of patients now.
- Medical education: none. Motivation: extreme.
- Check out his TED Talk – “How I repaired my own heart”:
Superpatient takeaway: Digitization transforms what ordinary people can do.
This is obvious in every other part of life, but for some reason people think medicine is different.
What superpatients do was theoretically possible a generation ago, but really really hard: the internet and digital technology just make it infinitely easier. The Oscar-nominated 1992 film “Lorenzo’s Oil” tells how years of immense effort in the 1980s made it possible for parents Augusto and Michaela Odone to discover a treatment for their child’s neurological disease. Diagnosed at 5, he was expected to die by 10, and lived to 30. They did this, despite skeptics saying they were nuts. Even the existing parent support group said they were nuts!
Reality is what it is, whether we know it or not. Digitization of knowledge and tools have created profound changes in what’s possible at the fringe of medicine.
Next in the series: #7 Empowerment means increasing someone’s abilities