“My Porphyria Went Away”

I asked Aaron Blaisdell what was most surprising about his experience with “ancestral health” — adopting a evolutionarily reasonable diet. “That my porphyria went away,” he said. Aaron’s porphyria is/was a form of sun sensitivity. “My mother has it. Her father had it,” he said. It was obviously genetic. Scientists had located the genes involved. Aaron assumed that someday, not soon, it might be possible to fix the genes involved. Until then, he didn’t think anything would change. It was a rare and not particularly damaging disease — it wouldn’t attract a lot of research.

How reasonable the gene-fix idea sounds, in spite of being wrong. I’ve heard dozens of scientists, including Bruce Ames and James Watson, say that we are entering a new age where we will figure out the causes of diseases (their genetic causes) and fix them. A new age of rational medicine. To fix a car or dishwasher, you figure out the part at fault and repair or replace it. The metaphor is so convincing that nobody points out another possible metaphor: Your washing machine isn’t working because you haven’t plugged it in. You need to read the owner’s manual. Most health-care researchers, especially at medical schools, are studying the parts diagram of the washing machine, trying to figure out what part is at fault, when the problem is elsewhere: Not plugged in. Much easier to fix.

4 Replies to ““My Porphyria Went Away””

  1. Thanks for featuring my experience on your blog. One small quibble, however. I wouldn’t say that the “fixing the gene” approach is necessarily wrong. Rather, I think it is often a much less viable, and much more expensive option than fixing the environmental cause (e.g., removing wheat gluten and omega-6 laden vegetable oils from my diet in my case). This environmental-change approach did not, however, clear up my red-green colorblindness. A group of researchers that recently created a red-green colorblind squirrel monkey were subsequently able to correct the deficit with gene therapy and return the afflicted individuals to full trichromatic vision (http://www.wired.com/wiredscience/2009/09/colortherapy/). My point is that all of our phenotypic effects reflect the interactions of genetic and environmental factors. In some cases, the environmental contribution is easy to manipulate to fix the problem, but in other cases it may be necessary to intervene at the genetic level (if possible). But your point is very well taken that the overemphasis on modern, highly technical approaches used in modern medicine, stemming from the dominant body-is-machine metaphor, blinds medical science and the lay public (and government and funding agencies) to the body-as-natural-system framework that we are advocating with our Ancestral Health Symposium and Ancestral Health Society. Parkour!

  2. Thanks for the comments, Aaron. I don’t think it’s a mistake to think of the body as a machine — but let’s read the owner’s manual.

  3. Usually when the dishwasher doesn’t work, you just need to clean out the trap.

    We don’t get an owner’s manual for our own bodies. At issue, anyway, is often to a large degree that they can’t patent your typical “owner’s manual” solution. They certainly don’t get a Nobel for it. (Barry Marshall and Robin Warren did, but they couldn’t patent it either.)

    This story seems apropos: http://blogs.discovermagazine.com/notrocketscience/2010/04/01/scientists-discover-gene-and-part-of-brain-that-make-people-gullible/

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