Analysis Of Adrenoleukodystrophy In The Film Lorenzo's Oil

“1 in 17,000 boys have ALD and two of them are mine,” states Janelle Syverson. Adrenoleukodystrophy is a disease that is inherited from the mother to her son through the X chromosome. The disease has affected both of Janelle’s sons and unfortunately one of her sons, PJ, died this past February from this horrible disease. ALD does not allow the breakdown of certain fats from a long chain of fatty acids, which in turn affect the myelin and can cause the myelin to deteriorate. In return this affects the males cognitive behavior and will cause the child to go into a vegetative state within two to five years after diagnosis. The cause is passed down from mother to son through the X link chromosome making this disease affect the male child.

In 1992, there was a movie called Lorenzo’s Oil, in this movie Lorenzo has ALD and his mother and father discover a mixture of oil to help stop the disease from progressing. It has been proven to work and has been given to boys in different situations and at different stages of this disease. The oil has not been approved by the FDA but was endorsed by a physician at John Hopkins by the name of Dr. Moser. This method of treatment is very costly and is not covered by insurance and is not used very often. Another avenue is by having a bone marrow transplant done. Again if the bone marrow transplant is done at an appropriate time it will help stop the disease from progressing. The only problem with both treatments is making sure diagnosis is confirmed prior to severe progression of the disease. The treatments discussed only stop the progression of the disease and do not cure the disease. Unfortunately there is no cure for adrenoleukodystophy and a cure is not in sight for this

Normally a young male is in a vegetative state within two to five years of diagnosis, unless symptoms are not to far advance. Unfortunately for PJ he was too far advanced and did pass away in February 2015 from this horrible disease. But he did save his brother’s life and Kody has not shown symptoms and has not needed treatment as of date. When the time comes Janelle is prepared to have Kody receive the bone marrow transplant and stop the disease in its tracks. She has already lost one child and does not want to experience that type of pain again with her last living child. As of today, newborn screening has been approved but has to be passed by the Arizona state legislature. Newborn screening is being practiced in a few states and has prevented over eight boys from having to suffer from this disease. The goal is to have newborn screening done across the United States for this disease and help prevent it from affecting other