Lorenzo's Oil

Lorenzo’s Oil

            Though this story takes place almost 30 years ago, it's an inspiration to anyone trying to heal themselves or their children and who realize how inadequacies in our bodies can be aided and in many cases healed, with the right mix of nutrients.  It's also a testament to the power of love and persistence.  A heart-wrenching and inspiring true story, Lorenzo's Oil is a movie about a previously healthy and active little boy who suddenly became gravely ill in 1984 in a matter of a few short months from a rare genetic disease called X-linked Adrenoleukodystrophy  (ADL) that attacks the myelin sheath of the central nervous system.  The body is then not able to properly metabolize Very Long Chain Fatty Acids (VLCFA).   The enzyme that gets rid of the excess saturated fat is defective, so the body builds up too much saturated fat, which then begins destroying the myelin sheath, the protective coating around the axon of a neuron.  Up to the point of Lorenzo’s diagnosis, it was known that everyone died around 2 years after diagnosis and a cure was not being worked on.

            His parents, Augusto and Makelah Odone, with no medical background, are the ones who researched and found a cure to stop the progression of the disease.  For Lorenzo, it was too late.  Although it prolonged his life to age 30, he was blind, couldn’t speak, walk or talk.  However, the oil known as Lorenzo’s Oil became a gift to the medical community and those afflicted by ADL, that is still used today, and can stop the progression of the disease if it is caught early enough.  The oil, a mixture of erucic and oleic acids, stops the disease, but cannot regenerate the myelin sheath.  

            Lorenzo’s parents were amazing people.   When they saw after a month or so of the restricted diet not helping their son’s blood levels, they began going to the National Institute of Health (NIH) in Bethesda, MD to research everything that was known about the disease.  They organized and raised the funds for an international conference to get all the scientists in one room for a thinktank.  His mother, Makelah, found a study done in Poland where they were able to manipulate the fatty acids of pigs.  Thus, they began giving Lorenzo oleic acid (olive oil), and were successful in lowering their son’s VLCFA blood levels by 50%.   It was as far as the oleic acid lowered the levels. 

          Lorenzo continued to deteriorate.  Lorenzo’s father Augusto, using an analogy to a kitchen sink, explained the process of metabolism of these fatty acids.  He said to picture a sink with two faucets:  one faucet was representing the diet which was contributing the VLCFA.  The other faucet was biosynthesis of these VLCFA.  The restricted diet removed one of the pathways, but they weren’t able to stop the second pathway (the biosynthesis).  Augusto figured out, when the medical community hadn’t, that there must be only one enzyme that makes VLCFA and shorter-chain fatty acids in the body.  In other words, Competitive Inhibition.    So, the drain at the bottom of the sink, which works normally in most people, is clogged in Lorenzo.  They needed to figure out a way to stop the biosynthesis of the very-long chain fatty acids. 

They researched some more, and realized they needed to get erucic acid, which can be extracted from rapeseed oil.  The oil mixture worked by manipulating the shared enzyme to make monounsaturated fatty acids at a much higher and faster rate than the saturated fatty acids.  This effectively stopped the making of the harmful saturated fatty acids, and there wasn’t an excess of VLCFA for the body to get rid of.   

Once they gave this to their son his blood levels of VLCFA returned to normal, thus stopping the progression of the killer disease.  They also needed to keep him on the saturated-fat-restricted diet. 

They formed The Myelin Project, an organization to fund and bring together science to find a way to regenerate the myelin sheath.  Lorenzo did learn to communicate with the movement of a couple fingers and blinking his eyes.  He died May 30, 2008, one day after his 30^th birthday.  It was sort of strange to realize I watched this movie on the 2^nd anniversary of his death.  A very sad but inspiring story.  I must of teared up 4 times while watching it.  My son was 6-years old at the time (he initially began watching the movie with me), and I think that’s why I also found it especially heartbreaking.  Have you seen the movie?

Nutrigenomics

"What is food to one is to another bitter poison"     -Lucretious   (c. 98-55 B.C.)

I'm amazed at how similar we are, but how the slightest genetic variation or mutation can make us so different.  Food and nutrients, made up of chemical compounds, can have varying effects on our health, and depending on our genetic differences the effects can often be profound.  I'm interested in the role of food and nutrients on our health, healing, and disease, particularly their influence on the expression or inhibition of our genes, called  nutrigenomics.   

This is a blog of articles and  opinions based on research that I've found on the subject.  I also include the effects of our environment on our genes and our health, because it's such an important and related topic.