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Remembering Lorenzo Odone

Maybe of you may not recognize the name Lorenzo Odone or know why he would be on this celebrity health website. Lorenzo was the unfortunate boy depicted in the Hollywood film "Lorenzo's Oil," which starred Nick Nolte and Susan Sarandon.

Lorenzo was diagnosed with adrenoleukodystrophy (ALD), a severe and usually fatal neurological disorder, in 1983 at the age of 5. Lorenzo's parents, Augusto and Michaela Odone, left no stone unturned in their efforts to find a cure for their son's ALD. They ultimately developed a mixture of two cooking oils, later known as Lorenzo's Oil, and began feeding it to Lorenzo. While he had already become uncommunicative and bedbound, it helped stabilize his condition and enabled him to survive for decades beyond expectations. We now know that the oil actually prevents onset of ALD in susceptible boys, thus saving their lives, although it does not cure those who already have the disease. It was a tremendous achievement that left medical researchers in awe.

Lorenzo died early this morning at the age of 30. Even though he never knew it, he was a celebrity patient because his story educated millions of people about ALD. His father, Augusto, is still active in trying to find a cure for ALD and other related leukodystrophies. Please check out his webiste at www.myelin.org.

I had the great privilege of telling Lorenzo's story in my book, "When Illness Goes Public," in a chapter entitled "The Last Angry Man and Woman: Lorenzo Odone's Parents Fight the Medical Establishment."

Barron H. Lerner, MD, PhD
Columbia University Mailman School of Public Health
Author of "When Illness Goes Public: Celebrity Patients
and How We Look at Medicine" (Johns Hopkins, 2007)

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