What Is Lorenzo's Oil?

Learn About the ALD Treatment Inspired by Lorenzo Odone

Lorenzo's oil is a treatment developed for childhood cerebral adrenoleukodystrophy (ALD), a rare and typically fatal degenerative myelin disorder. Over the years, the treatment has gained tremendous recognition thanks to ongoing scientific research, the Myelin Project, and the 1992 feature film, Lorenzo's Oil.

Young boy looking at glass of milk
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An Introduction to Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy (ALD) is a genetic disease causes a build up of long-chain fatty acids that destroy myelin, the protective cover over the neurons in the brain. Without these protective coverings, degenerative symptoms such as blindness, deafness, seizures, loss of muscle control, and progressive dementia can all occur.

Symptoms of ALD generally appear between the ages of four and ten. The disease progresses quickly and usually is fatal within two to five years of symptom onset. Because of the way ALD is inherited, through the X chromosome, the most severe form of the condition affects only boys. The adrenal gland is also affected, known as Addison's disease, in 90-percent of cases.

What Is Lorenzo's Oil?

According to The Myelin Project, Lorenzo's Oil is a combination of a 4 to 1 combination of erucic acid and oleic acid, extracted from rapeseed oil and olive oil, respectively. The oil therapy, if started early in asymptomatic boys with ALD, or boys who have not yet shown symptoms, has been proven to reduce the amount of long-chain fatty acids when ingested daily, which may slow the onset of the disease.

However, studies have not been able to show that the oil stops disease progression and it is known that it does not reverse or repair damaged myelin. The best treatment currently available for ALD is a bone marrow transplant while still asymptomatic. However, bone marrow transplants are very risky for young patients due to risks of infection and rejection.

The Boy Who Inspired the Treatment

The treatment is called "Lorenzo's oil" after Lorenzo Odone, a boy with ALD whose parents, Michaela and Augusto, refused to accept that there was no treatment for ALD and that Lorenzo would die shortly after his diagnosis in 1984. Through intensive research and persistence, Lorenzo's parents helped develop the oil.

After taking the oil every day since its development, Lorenzo ultimately outlived doctors' predictions by over 20 years. He died one day after his 30 birthday from complications of pneumonia. The family's story was famously portrayed in the 1992 movie, Lorenzo's Oil, starring Susan Sarandon and Nick Nolte. 

Availability of Lorenzo's Oil

Lorenzo's oil is currently only available to patients in the United States who are enrolled in a clinical trial as it is still considered an experimental drug. The oil has not been approved by the U.S. Food and Drug Administration (FDA) for marketing. That said, some insurances may cover the cost of the experimental treatment. The oil is jointly manufactured by Croda International of Britain and SHS International. SHS International is the worldwide distributor of the oil.

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  • "Information About Lorenzo's Oil." The Myelin Project. 13 Feb 2009

By Mary Kugler, RN
Mary Kugler, RN, is a pediatric nurse whose specialty is caring for children with long-term or severe medical problems.