Everyone Has an Orphan Disease
A disease is defined as a disorder or dysfunction of an organ or system of the body. In America, we've defined orphan diseases as those effecting less than 200,000 people nationwide.
To this point in history, we have used illness diagnosis as a pretty gross approximation of what's happening in each person who requires care. Someone is diagnosed as having diabetes, for instance, which is quite common. We may even try to get some granularity by understanding what type of diabetes the patient has. These types are still so common that they have started to represent diagnoses on their own. It's quite common to hear people say that they have type II diabetes or non-insulin dependent diabetes.
This may seem to be meaningless word play, but it has important implications for our health. The FDA, by law, can only approve indications for treatment of diagnoses. So what we call things determines what people spend billions on. Any company that spends billions would like to get them back, so these companies generally focus on diagnoses that have a large market for the treatments they develop. And so we needed the orphan diagnoses so that companies would have incentives to look at diagnoses that effected fewer individuals. This was a good change, but it only comes close to the real point.
Every patient, every person, has a unique set of organ system dysfunctions leading to illness that is unique regardless of the primary diagnosis they are given. Two people may have the same diagnosis of type II diabetes, but one may have an enzyme system that chews up the medication faster than the other does. That's just a single example of a simple complication. Now imagine that multiplied by the dozens of genes that effect every system and every illness, not to mention the differences brought about by environment.
We said that disease is a dysfunction of a part or system of the body and that any disease with less than 200,000 people in America is an orphan disease. We see that each person, regardless of what common diagnosis they have, has a unique set of complicating circumstances that effect their health and wellness choices.
Everyone has an orphan disease.
Yet we do research and practice medicine as if that weren't true. We do studies on large groups of people and average the results and tell patients what they need based on what worked best for the average person. As my friend Dave Collum says, "Don't forget that the average person has one ovary and one testicle." I've never yet treated the average person, and none of us deserve to be treated as less than the individuals we are.
So we need a better way, but it's not been doable before. Recent advances in artificial intelligence and machine learning have shown glimpses but not yet given us a light at the end of the tunnel. However, just recently the world was introduced to the blockchain. If you don't know about it yet, you will. The concept is big and it's going to rearrange how we do just about everything we do.
The good news for those of us suffering from orphan diseases (all of us) is that it can lead us to a better way. So I'm announcing here that better way: The Dragonsbane Project. It's where I'll be spending a lot of time and effort to create a better, more accessible, completely personalized source for our wellness options. I hope you join me there.