The movie Lorenzo's oil was completed in 1992. I was still a struggling college student at the time and for some reason missed the showing of this movie.
Last night, I happen to watch it for the first time, thanks to HBO.
If you haven't seen it yet, Lorenzo's oil is the story of Lorenzo Michael Murphy Odone who is afflicted with the rare disease adrenoleukodystrophy (ALD) and his parents' (Augusto and Michaela Odone) crusade to understanding their son's disease and finding a cure.
The movie's message was very clear, medical science should serve the (sick) people and not the other way around: sick people serving medical science by being mere lab rats in human studies or clinical trials.
According to the National Institutes of Health:Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain.
People with ALD accumulate high levels of saturated, very long chain fatty acids (VLCFA) in the brain and adrenal cortex because they do not produce the enzyme that breaks down these fatty acids in the normal manner.
The loss of myelin and the progressive dysfunction of the adrenal gland are the primary characteristics of ALD.
The Odones were "assured" of their son's death after 24 months of ALD diagnosis. In this BBC feature story in 2004, Lorenzo was 25 years old (making him 27 now).
Just because his parents never gave up and their persistence led to the discovery and patent of Lorenzo's oil (a mixture of oleic acid and euric acid), which was at first found to delay the progression of ALD symptoms - and later - the founding of The Myelin Project.
[In Photo: Lorenzo and friend Oumouri, after 20 years of ALD diagnosis. Image taken from The Myelin Project]
In the past year I have been blogging about the pharmaceutical business, medical science breakthroughs, and each time I read about drugs discoveries and patents and human clinical trials, I cannot help but think about the human guinea pigs that has been used before some big pharma company or some big-named doctor reap their rewards.
Lorenzo's story reminds us that medical science should be used for the good of mankind. I hope that in this day and age of stem cell research and biotechnology, scientists, medical research institutions and the industries that surrounds them all can still remember the phrase " for the good of mankind" in all their scientific endeavors.
im am 17 years old and i just finish watchiong the movie lorenzo oil in my medical class. this movie expired me to continue to achieve my goal of being a doctor. i feel the parents of lorenzo are very brave people.
Posted by: Breana | April 11, 2008 7:58 PM | Permalink to Comment