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Lorenzo's Oil - The Oil

Overview


Lorenzo's Oil is a combination of a 4:1 mix of oleic acid and erucic acid, extracted from rapeseed oil and olive oil designed to normalize the accumulation of the very long chain fatty acids in the brain thereby halting the progression of adrenoleukodystrophy (ALD).


Lorenzo's Oil is specific to ALD, does not repair myelin, and does not have any known effect on other demyelinating disorders. In ALD presymptomatic boys, however, Lorenzo's Oil often (but not always) prevents the onset of the disease by stopping the body from producing the very long chain fatty acids, whose buildup leads to demyelination.  It is jointly manufactured by Croda International and The Scientific Hospital Supply, and it is distributed by Nutricia Advanced Medical Nutrition. 

History


Failing to find a doctor capable of treating their young son Lorenzo's rare disease, Augusto and Michaela Odone sought their own cure. They set out on a mission to find a treatment to save their child. In their quest, the Odones clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about Adrenoleukodystrophy (ALD), much less by laypeople. But they persisted, setting up camp in medical libraries, reviewing animal experiments, badgering researchers, questioning top doctors all over the world, and even organizing an international symposium about the disease.


Despite research dead ends, the horror of watching their son's health decline, and being surrounded by skeptics (including the coordinators of the support group they attended), they persisted until they finally hit upon a therapy involving adding a certain kind of oil (actually containing two specific long chain fatty acids, isolated from rapeseed [canola] oil and olive oil) to their son's diet. 


They contacted over 100 firms around the world until they found an elderly British chemist (Don Suddaby) working for Croda International who was willing to take on the challenge of distilling the proper formula. It proved successful in normalizing the accumulation of the very long chain fatty acids in the brain that had been causing their son's steady decline, thereby halting the progression of the disease. There was still a great deal of neurological damage remaining which could not be reversed until new treatments were found to regenerate the myelin sheath (a lipid insulator) around the nerves.

How to Get Lorenzo's Oil

The United States

In the U.S., Lorenzo's Oil is currently only available to patients taking part in a clinical trial under the direction of the Kennedy Krieger Institute. Thus, Lorenzo's Oil can only be obtained through prescription by Kennedy Krieger authorized physicians. A 500ml bottle costs approximately $56.00. Some insurance companies will provide coverage for the oil, but others do not because it is still considered an experimental drug by the Food and Drug Administration (FDA).  Please contact:

Kennedy Krieger Institute
707 N. Broadway | Baltimore, Maryland 21205 
Referral specialists are available from 8:00 A.M. to 5:00 P.M. Eastern Standard Time (EST), Monday through Friday, and will gladly answer your questions.
Toll-Free Main Number (800) 873-3377

Outside of The United States

If you live outside the United States and you would like to obtain the oil, please contact Nutricia:

NUTRICIA CLINICAL CARE LINE
For further information and all enquiries, please contact our Nutricia Clinical Care Line:
Phone: 1800 060 051 
(Monday to Friday, between 9am and 5pm (AEST) 
excluding NSW Public Holidays)
Email: nccl@nutricia.com

NUTRICIA CUSTOMER SERVICE
Orders may be placed by phone, fax, post or email.
Phone: 1800 889 480 
(Monday to Friday, between 9am and 5pm (AEST) 
excluding Public Holidays)
Fax: (02) 9870 7204
Email: ordersau@nutricia.com
Post: Locked Bag 2010
North Ryde Business Centre 
NSW 1670

How it works

The oil, if started early in boys with adrenoleukodystrophy (ALD) showing no symptoms, is now known to have some benefit in preventing the childhood cerebral form of adrenoleukodystrophy. Researchers are still trying to understand the complex relationships among fats in the body, and how Lorenzo's oil could be further modified to be more effective.  The oil is designed to normalize the accumulation of the very long chain fatty acids in the brain that thereby halting the progression of ALD.