2015-0273
Title
Proclamation: "ALD Awareness Month in St. Charles Parish"
Body
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 and affects approximately 1 in 17,000 boys worldwide and is not limited to certain ethnicities; and,
WHEREAS, the classic childhood form of X-ALD is the most severe. 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 and rapeseed oil with a very low-fat diet, stem cell transplantation through a bone marrow transplant may stop the progression if the disease is diagnosed and treated early, adrenal insufficiency can be treated effectively with steroids, medications can be prescribed to help relieve other symptoms, physical therapy may h...
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