Lorenzo's Oil And The Myelin Project
ALD is due to the lack of enzymes that break down very long chain fatty acids (VLCFA) which results in an accumulation of VLCFA in the blood and tissues of the body, with subsequent harmful effects.
In Boys: Average age of onset is 5 to 10 years. The usual progression is loss of speech, blindness, deafness, progressive paralysis, and death within two years after onset.
In Adults: symptoms develop slowly and resemble multiple sclerosis.
The Odones discovered a mixture of edible oils that can prevent ALD as well as halt its progression, when combined with a special diet. Although it is too late for Lorenzo, many children are benefiting from this programme.
Specialized cells wrap myelin around the nerve in a spiralling motion. Myelin is made up of 60 percent fat and 40 percent protein. It insulates every nerve, assuring proper conduction of nerves from one part of the body to another.
Eight other inherited diseases involve the breakdown of myelin as well as the most well known of the demyelinizing diseases, multiple sclerosis.
The Myelin Project, a non-profit foundation, aims to discover ways to regenerate the myelin sheath around the nerves. The project has created a world wide network of 12 top research labs, financed many studies, and encouraged a cooperative approach to research. (www.myelin.org or call 1-202-452-8994).
Researchers have been able to successfully implant myelin generating cells into animals. In 1999, Dr. Timothy Vollmer of Yale University Medical School started a trial where myelin generating cells will be transplanted into 5 MS patients.
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