Augusto Odone is an Italian economist best known for his son, Lorenzo, after which Odone named the oil that he helped develop to treat his son’s neurological disease. Lorenzo’s oil was the subject of a 1992 movie starring Nick Nolte and Susan Sarandon, and of course what most people think they know about the story they learned from the Hollywood version.
This past week Augusto Odone died at the age of 80, prompting another round of media reporting about Lorenzo’s oil.
Probably because of the Hollywood movie, this story more than any other is an iconic example of the disconnect between the simple narratives the media love to tell (and we love to tell ourselves) and the more complex reality.
The basic facts of the story are not in dispute. Lorenzo Odone, son of Augusto and his wife, had a neurological disease known as X-linked adrenoleukodystrophy (X-ALD). This is a devastating genetic disease in males, with two basic forms. Childhood onset tends to progress rapidly and typically death occurs by age 10, although lifespan can be increased if an early bone marrow transplant is given. In adult onset, symptoms may not appear until adulthood, and then tends to progress more slowly, over decades. Some boys with the X-ALD gene do not develop clinical findings. Women are carriers, with partial protection from their second X chromosome. About half of female carriers become symptomatic, with the slower adult form of the disease.