Thursday, March 12, 2009

Sometimes, broad brushstrokes are good

If you are dealing with a frustrating medical condition that you don't fully understand, I recommend watching Lorenzo's Oil. I just did, sitting here on the couch with my cough drops and painkillers.

Lorenzo's Oil is about the real life struggle of Augusto and Michaela Odone to find a cure for adrenoleukodystrophy (ALD). They discover in 1984 that their son, Lorenzo, will probably die from ALD within 24 months, and they take it upon themselves to learn and master the science behind the disease. In about 2 years, they develop an oil which does seem to slow the progression of ALD. Lorenzo ends up living for 22 years - severely handicapped by his disease, but alive. And according to the film, this oil has helped many other boys with ALD.

Now, of course, this is Hollywood. The story needed a bad guy, and the bad guy in this film is science - the science that needs time, clinical trials, and funding to crank its wheels. I found this excellent paper about the movie and the false hope it can produce in people with chronic illness, and how that false hope can become a struggle for doctors and scientists. Ironically, while the film depicts science and doctors as sometime roadblocks to making progress, the film also clearly shows that the Odones based all of their hypotheses about the oil on previously conducted science. And, in fact, they formed the Myelin Project, which partners with scientists, to:
"find a cure for demyelinating diseases, such as the leukodystrophies which are genetic and multiple sclerosis which is acquired".
But they also say:
While The Myelin Project has taken the conventional steps to advance remyelination research, we have taken the unconventional step of encouraging direct interaction between families and scientists, we continuously remind the scientists that there are people waiting for effective treatments.
This blog is my spin on that same patient/science tension - to a much lesser degree than the Odones, albeit. One of the most frustrating things about Psoriatic Arthritis has been the murkiness of information out there to help a patient truly understand the disease. I would guess that many people with autoimmune conditions feel the same way. So I started this blog to try to bridge the gap between science and my experience, between research's timeline and my timeline.

So, once again, I encourage everyone to become your own Chief Information Officers. I've know a lot of doctors - there are smart ones, and dumb ones, and rude ones and helpful ones. But the characteristic they all share is that they are human. There is only so much information one brain can carry. And nobody knows you, your disease course, and your timeline like you do. Empower yourself, and use your doctors as resources (and prescription writers).

Back to the cough drops. I'm watching "Gandhi" next. Beware.

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