2014-0251
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Proclamation: "ALD Awareness Month in St. Charles Parish"
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P R O C L A M A T I O N
WHEREAS, Adrenoleukodystrophy (X-ALD) is a serious progressive, genetic disorder that affects the adrenal glands, the spinal cord, and ultimately destroys the myelin sheath, an insulating membrane that surrounds nerve cells in the brain; and,
WHEREAS, X-ALD is an X-chromosome linked disorder. Women have two X-chromosomes and are the carriers of the disease and in some cases, can have a milder form of the disease, but men are most severely affected because they only have one X-chromosome and lack the protection provided by an extra X-chromosome; and,
WHEREAS, X-ALD affects approximately 1 in 17,000 boys worldwide and is not limited to certain ethnicities; and,
WHEREAS, the classic childhood form is the most severe usually affecting boys between 4 and 10 years of age. Initial symptoms are problems with concentration and learning, behavioral changes, impaired vision and hearing, and coordination difficulties. Symptoms are rapidly progressive and lead to severe disability with weakness of the arms and legs, swallowing difficulties, and impaired consciousness. 90% of the cases develop Addison's Disease which is where the adrenal glands do not produce sufficient steroid hormones. Death frequently occurs within 2 to 4 years after symptom onset; and,
WHEREAS, the milder adult-onset form is known as Adrenomyeloneuropathy (AMN), which typically begins between 21 and 35 years of age. The disability is progressive, usually causing wheelchair dependence and life expectancy is normal, unless patients additionally develop cerebral demyelination, which is the case for about 20% of patients then the progression and outcome will be similar as seen in the childhood form; and,
WHEREAS, X-ALD has no cure, however, there are several methods being used that are showing signs of slowing down the progression of the disease: using "Lorenzo's Oil" made from olive ...
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