Ever since I was a young boy, ‘Lorenzo’s Oil’ was one of my favourite films, even though I did not understand the science behind his wretchd disease. As I grew I researched Lorenzo’s illness, Adrenoleukodystrophy (ALD), and I have managed to get a loose understanding of how the degenerative disease worked.

I followed regularly updates from ‘The Myelin Project’, a project founded by Lorenzo’s parents, Augusto and Michaela and it is sad news to hear that a day after his 30th birthday Lorenzo Odone passed away. I hope that his story still helps to publisize the disease and ‘The Myelin Project’ goes from srength to strength to help sufferers in the future.

About Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy or ALD for short is a degenerative bioneurological disease that mainly affects men. Females are the carrier of the abnormal gene (X Chromosome) and pass the defect onto their male child. The onset of ALD is usually during early years (4-10) but can sometimes onset during adultood, but it is usually of a milder form.

ALD is part of a family of leukodystrophies that cause damage to the myselin sheath, a sheath that covers nerve cells around the brain. As this sheath degenerates, fewer and fewer impulses can be recieved so bodily functions cease to work. Unfortunately, the myelin sheath cannot be reproduced, which is what makes the prognosis from ALD and other leukodystrophies so bleak. Death usually occurs from childhood onset within anywhere from 1 to 10 years.

Lorenzo’s Oil

Despite the picture that the film, ‘Lorenzo’s Oil’ depicts, Lorenzo’s Oil is far from a cure and is a stall at best, to slow down the effects of the disease. It is most widely used as a prevention of the disease for boys known to have the responsible defect. Lorenzo’s oil is a mixture of oleic acid and erucic acid, a mixture put together by Augosto Odone. It works by lowering the amount of long-chain fatty acids in the brain and the adrenal cortex. By slowing down the break down of the adrenal gland, the symptoms can be delayed or sometimes prevented in cases where ALD is suspected yet the onset has not begun.

Although Lorenzo’s Oil is not a cure for the fatal disease, it has helped raise the profile of ALD and many other degenerative bioneurological diseases as many of thse diseases are only recently understood and needed some media attention to make foundations aware of it.

My Final Words

My condolences to Augusto Odone, the father of Lorenzo, who fought to keep lorenzo alive and never stopped trying to find a cure for him and many others. Even though Lorenzo passed away on Friday 30th May, the work that both Lorenzo and Augusto did for raising the profile of the disease is an incredible feat and will never be forgotten.

Good day to all.

Ps. I will add a link to the website for ‘The Myelin Project’ in my blogroll so you can understand more about the project and their aims.