Lorenzo's Oil

by Maureen Kennedy Salaman

President, National Health Federation
December 2005

It is 1984, and something is happening to bright, active six-year-old Lorenzo Odone.  He collapses, he raves, he  loses his hearing.  Terrified, his parents Augusto and Michaela rush him to the doctor. The diagnosis is a death warrant. They are told that Lorenzo has adrenoleukodystrophy (ALD), a rare nerve disease believed to be caused by a genetic enzyme defect that allows long‑chain fatty acids to accumulate in the brain and body.  The fatty acids destroy the myelin sheath, the protective coating around nerve cells that allows electrical impulses to flow normally from cell to cell.  Doctors give Lorenzo two years to live but not before, they predict, he will lose all physical function.

Conventional medicine, of course, offered the Odones no treatments or hope. They were told to be patient as they watched their son sink into a semi-vegetative state.  Refusing to be patient or give up, they diligently and determinedly researched the disease and how it affects the body.  In their quest for a treatment, they clashed with doctors, scientists, and support groups who were skeptical that anything could be done about ALD, much less by laypeople.

Augusto and Michaela's anguish and determination to find a cure for their son is documented in the 1992 movie, Lorenzo's Oil, starring Nick Nolte and Susan Sarandon.  The movie is named after the mixture of rapeseed oil and oleic acid - two forms of essential fatty acids - that saved Lorenzo's life.  What the couple discovered, heroically on their own, was that certain fatty acids - oils that help the body assimilate saturated fat - can reverse the enzyme defect of ALD.  Five years of painstaking work and heartbreaking trial and error resulted in their developing Lorenzo's Oil, a formula of omega-6 and omega-3 oils that stopped the progression of their son's disease.

If you saw this movie and wondered how Lorenzo is today, you might be surprised.  Lorenzo celebrated his 27th birthday on May 29, 2005, outliving his mother, who succumbed to cancer in June 2000.  Lorenzo still takes Lorenzo's Oil, and has far surpassed the average life expectancy of boys with the childhood form of ALD, which is a mere 2-3 years.

The time it took to develop Lorenzo's Oil took its toll on Lorenzo's health.  He was deprived of most of his physical functions, but his mind is intact.  Today, he communicates through blinking his eyelids to say no and wiggling his fingers to say yes.  He enjoys music and being read to.  Lorenzo will not regain his speech or full mobility until research catches up and his myelin can be restored.  His father has faith that this can - and will - be accomplished in Lorenzo's lifetime.

Lorenzo's Oil is Gaining Attention

What I found so fascinating in researching my book, All Your Health Questions Answered Naturally, was the number of studies that compare MS with ALD. The afflictions have similar symptoms, both have lesions that destroy the myelin sheath, and in one article, autopsies of patients who died of both diseases had similar brain damage.  They are so similar, in fact, that many physicians misdiagnose ALD as MS.

Although the FDA has still not approved Lorenzo's Oil for ALD, much less MS, positive research encourages the fight for Lorenzo's Oil as a treatment for ALD.

One research study in particular has gotten institutions, physicians, patients, and parents very excited.  It showed conclusively that Lorenzo's Oil, when given to a patient early on, will stop the disease in its tracks.

Dr. Hugo W. Moser, director of neurogenetics at the Kennedy Krieger Institute and professor of neurology and pediatrics at John Hopkins University, was among the early skeptics.  But in 1989, after seeing Lorenzo's success, he began a ten-year study of 89 male infants and toddlers who had the genetic enzyme defect and treated them with Lorenzo's Oil.

As of last year, 66 boys remained symptom-free.  That's an incredible 75 percent!

This vital, ongoing study is prompting others like it, including research conducted out of the FDA's Office of Orphan Products Development.  An orphan disease is defined as a condition that affects fewer than 200,000 people nationwide.  This includes cystic fibrosis, Lou Gehrig's disease, Tourette's syndrome, and ALD.

The Availability of Lorenzo's Oil

In the United States, Lorenzo’s Oil is currently only available to patients taking part in a clinical trial under the direction of Dr. Hugo Moser of the Kennedy Krieger Institute.  He can be reached at (800) 873‑3377.

The oil is jointly manufactured by Croda International of Britain and SHS International (Scientific Hospital Supply).  SHS is also the worldwide distributor of the oil.  For more information visit their website: www.shsna.com or else contact SHS at: SHS North America, 9900 Belward Campus Dr., Suite 100, Rockville, Maryland 20850 USA; Telephone 1 (301) 795-2300; Toll Free: 1‑800-365-7354.

Lorenzo's Oil can be obtained (again in the U.S.) only through prescriptions written by Kennedy Krieger authorized physicians.  A 500 ml bottle costs $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 FDA.

The Myelin Project

In order to encourage FDA approval of Lorenzo's Oil as an early treatment and encourage research that would restore the myelin sheath, the Odones founded The Myelin Project.  Augusto Odone continues the fight for his son and works out of his office at Myelin Project Headquarters.

Lorenzo likes to receive mail from his “friends” and well‑wishers.  You may write to him c/o The Myelin Project at the following address: 

The Myelin Project Headquarters, 2136 Gallows Rd., Suite E, Dunn Loring, Virginia 22027 USA; Telephone:  1 (703) 560-5400;    Toll Free 800-869-3546;  Website: www.myelin.org.