Читать реферат по английскому: "Ald" Страница 2

(Назад) (Cкачать работу)

Odones kept Lorenzo on the diet. In June of 1984, Augusto and Michaela learned about another type of therapy in Boston. After packing up their sick little boy, they traveled to Boston for the immunosuppression therapy study. This kind of therapy involved massive doses of chemotherapy administered over a period of about three weeks. The side effects were that of any cancer patient receiving chemo treatments. These include nausea, hair loss, and weight gain or loss to name a few. At this point Lorenzo could still walk, talk and communicate, but that would all change. Believing they had no other alternative, the Odones enrolled Lorenzo in this study as well (Universal). This study turned out to be useless and brutal to the patient. The researchers were in the dark. They were blindly searching for a cure or treatment that would work to stop the progression of ALD. Shortly after the Odones returned home from Boston they received a phone call from the President of the ALD Foundation. The Foundation is a support group for the parents and families of children with Adrenoleukodystrophy. The group provides support, raises funds for research, and holds annual meetings. In July of 1984 the Odones traveled to the ALD Foundation meeting only to find that it wasn?t what they had hoped for. The president and his spouse were satisfied with the rate of progress that medical science was making, but the Odones were not. The Foundation also refused to discuss the findings of the diet trial informally among the parents (Universal). Disappointed once again, Augusto and Michaela returned home to D.C. As September came near Augusto made a decision. He was tired of letting the doctors and scientists control what happened to his son. He did not want to be ignorant and blindly sign Lorenzo?s care over to them. From that day forward he and Michaela spent hours at the library, reading and learning everything that they could about biochemistry, neurology, and ALD. Their goal was to understand Lorenzo?s disease so that they could react appropriately. The first obstacle was to understand why the diet was not working. Augusto made an analogy of Lorenzo?s body to a kitchen sink with a tap for what he eats and a tap for biosynthesis. The paradox was why when the eating tap was shut off did the biosynthesis tap increase (Universal). Michaela found a logical explanation for this in a polish rat study of fatty acid manipulation. This article stated that biosynthesis of C24-C26 was inhibited in lab rats by loading them up with a different fatty acid, namely C18 or Oleic acid (Universal). On November 10, 1984, at the First National ALD Symposium, scientists clarified the idea of feeding Oleic acid to ALD boys. One scientist had taken actual ALD fibroblasts and cultured them with Oleic acid to find a fifty percent drop in C24-C26 levels (Universal). I feel that medical science was a major let down at this point in their research. Knowing that oleic acid could produce a significant drop in C24-C26 levels they did not even try to get a trial study. It took the bravery of one family to push them far enough. I can?t help but to wonder how many cures or therapies researchers overlook each year because of lack of funding and support. Taking things into her own hands, Michaela called scores of chemical companies looking for oleic acid in a trygliceride form. She found it at a company called Protochem Laboratory. On November 21, 1984, the Odones started Lorenzo on thirty grams of Oleic acid each day combined with the restricted diet. In one month his levels of C24-C26 dropped fifteen percent and in two months fifty percent. By the third month however, the tests showed only a slight decrease and by the fourth month hardly any decrease at all. Augusto and Michaela were quite discouraged once again, but the experimental rats showed only a fifty percent drop as well (Universal). Augusto, being the simple minded person that he is, saw this as purely luck and observation, not understanding. Therefore he once again returned to the library to study in April of 1985, twelve months after Lorenzo?s diagnosis. By now Lorenzo could not swallow on his own, he was tube fed, he could not speak or see, and he was almost completely paralyzed. Although Lorenzo was in world of isolation, Augusto kept studying. He finally realized that the reason the oleic acid worked only half way was because the enzyme that synthesizes C24-C26 was the same enzyme that synthesizes fats lower on the chain. Because oleic acid is only C18 it is to far down on the chain to keep the single enzyme busy. Therefore the next logical step is to find a substance that is pure C22 or erucic acid. This acid is the chief component of rape seed oil, but this oil also contains C24-C26. Therefore a chemical company must extract C24-C26 from it. Protchem Laboratory could not do this, in fact, they thought it was nearly impossible, but they did put the Odones in touch with a company in England, Croda Chemicals, that could do it. It took almost a full year but eventually the pure erucic acid was bootlegged into the United States and into the hands of the Odones. This time Augusto and Michaela decided to test the oil on Deidra, Michaela?s sister and carrier of ALD, before giving it to Lorenzo (Newsweek 99). This safeguard was due to the fact that Gus Nikolias had studies stating that erucic acid caused heart problems. The Odones risked the oil anyway because it is the major component of rape seed oil and is eaten in great quantities in India. India, consequently, has a significantly lower rate of heart disease that the United States. Furthermore, Dr. Nikolias’ studies were done on rats and swine and not on humans. Deidras levels of C24-C26 dropped to normal within one month and the weekly EKG?s showed no problems, therefore Lorenzo was started on pure erucic acid along with the restricted diet on September 27, 1986. By December his levels were completely normal and by February 1987 he could