Is Lorenzo still alive?

Unfortunately, Lorenzo Odone passed away on May 30, 2008 -- one day after his 30th birthday. You can find more information on this wonderful person here.

What exactly is Lorenzo’s Oil?

Lorenzo’s oil is a combination of fats extracted from olive oil and rapeseed oil—specifically, a combination of the triglycerides of erucic acid and oleic acid in a 1:4 ratio. It is usually used in conjunction with a low-fat diet.

Why shouldn’t we use Lorenzo’s Oil?

Lorenzo’s oil does have side effects. It often can lead to thrombocytopenia, a condition in which there are not enough platelets—the cells that help blood to clot. This puts a child at risk of abnormal bleeding. Because it does not appear that Lorenzo’s oil is effective in treating children who have already begun to decline neurologically, it is not recommended that it be used in these patients because of the risk of the side effects.

How or where can we get Lorenzo’s Oil?

In the United States, Lorenzo’s oil is only available through prescription by physicians at the Kennedy Krieger Institute in Baltimore, which is studying the oil. You can contact the Institute about trial enrollment by calling +1 (443) 923-2750. Since it is not approved by the U.S. Food and Drug Administration, many insurers will not pay for it; Lorenzo’s oil costs upwards of $400 per month. Also, you can find out more information through the Myelin Project at www.myelin.org

Can Lorenzo’s Oil save our son?

If your son has been diagnosed with ALD because of a blood test, likely because another family member has been diagnosed with the disease or is known to be a carrier, he may benefit from Lorenzo’s oil. Treatment with Lorenzo’s oil is advisable only when the child has not yet shown any neurological symptoms, and has no visible lesions on the brain—in other words, he has the defective gene and will someday develop ALD or AMN, but has not done so yet.