最近大家都很關心的[腎上腺白質退化症adrenoleukodystrophy]和相關的資訊
若有機會的話,在寒假輔導那星期(段考過後)就來看這部感人的影片
http://health.icareasia.com.tw/feature/0011-3/body_10.htm
http://www.ettoday.com/2005/01/08/334-1738931.htm
http://www.myelin.org/aboutoil.htm 英文版 ALD 醫學資訊
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- 1月 09 週日 200515:11
羅倫佐的油(Lorenzo's Oil)
Lorenzo's Oil: The Movie
The film is based on the true story of Augusto and Michaela Odone and their son Lorenzo. In 1984 Lorenzo came down with adrenoleukodystrophy (ALD), a rare inherited disease. Doctors said that he would lose all his functions and die within two to three years. Refusing to accept this grim verdict, the Odones set out on a mission to find a treatment for ALD and to save their child (Lorenzo survived, and is now 25 years old). In their quest for a treatment the Odones often clashed with doctors, scientists, and support groups, who were skeptical that anything could be done about ALD, much less by laypeople. Their relentless struggle tested the strength of their marriage, the depth of their beliefs, and the boundaries of conventional medicine.
The Odones haunted medical libraries, reviewed countless animal experiments, badgered researchers, questioned top doctors all over the world, and persisted until a solution came to them in a moment of inspiration. They commissioned a special type of oil from a British firm, which normalized the accumulation of very long chain fatty acids in the brain, the hallmark of ALD.
The film ends on a positive note, showing several healthy children who, having followed a course of treatment with Lorenzo's Oil, remained symptom-free. The conclusion relates that Lorenzo can communicate again by a modified sign language, and that Augusto Odone was awarded an honorary Ph.D. for his pioneering work in researching and discovering a significant treatment for ALD.
In the second chapter of the story, the Odones founded The Myelin Project in the hope of finding a way to restore the myelin sheath, which is destroyed in ALD and a host of other myelin diseases, such as multiple sclerosis. If this vital substance can be restored, patients like Lorenzo may regain function and eventually lead a normal life.