4th
The Entrepreneurial Cure
Oliver, my new son, was diagnosed with a rare, 1 in 65,000 births, genetic disorder called Galactosemia. If you do the math it means that there are less than 5,000 people in the US with this disorder.
Galactosemia is the result of having lost the genetic code for the enzyme to digest any lactose. It is not lactose intolerance as with Galactosemia lactose actual becomes a poison and can kill the patient.
When we got the diagnosis we were told at that time that they were not sure if the milk he already had (about 36 hours worth) would have done any irreparable damage (at the time we were told he might have brain damage). It took a day before the genetic specialist was able to see Oliver and determine that the milk he had did NO damage and that we caught this quickly enough. I cannot explain how horrible the waiting was and the relief about knowing that he would be OK. It is an emotion that I have never felt before and I hope to never have to go through again.
So for Oliver’s future he will never be able to drink milk (or anything with Lactose in it) there are much worse things out there though the selfish side of me would still like him to have nothing at all.
This is the second time in the last 2 years that my family has been affected by a somewhat rare disease. My father was diagnosed with a cancerous brain tumor in November of 2006 which subsequently took his life in January of this year and now Oliver’s Galactosemia.
In both instances I see a very similar attitude from the overall medical community. It is basically this is what you have, here is the treatment and here are the side effects, good luck. However if you break out of the traditional doctors and look for the mavericks, basically the doctors that are also entrepreneurs, you can find amazing treatments that are going on that can make massive differences yet are not accepted by traditional medicine. They literally have to fight the system to get anything done.
The problem with these alternative treatments is that the medical system does not want to help with this. For example we have already found one of these treatments for Oliver but he first needs an MRI. MRI’s are almost impossible to get without a “reason” even if you want to pay for it electively. So that is part of my job today.
I think that from these 2 experiences that I have gone through that medicine is peaking. The traditional treatments and dramatic advances are slowed by ego’s, corporate bullshit and a unwillingness to look outside the box.
There are many cases were normal people (Lorenzo’s Oil) have cured very complex diseases without any medical training. I think that there is a business opportunity to set up a “for hire” infrastructure that when you get diagnosed with a disease you could hire this company to search the globe for solutions and then help you get them implemented.
Right now I am not in the position to launch such a company but as things calm down I am tempted to do it.
In order to get to the next level of cures medicine needs an entrepreneurial kick in the ass.
