2016-0289
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, however, 20-40% of women who are carriers have symptoms in adulthood; and,
WHEREAS, the classic childhood form of X-ALD is the most severe and can begin as early as age 2 but more commonly between ages 4-10. Early symptoms include hyperactivity, difficulty at school, difficulty understanding spoken material, deterioration of handwriting, crossed eyes, and possibly seizures. As the disease progresses, further signs of damage to the white matter of the brain appear; they include changes in muscle tone, stiffness and contracture deformities, swallowing difficulties, and coma; 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 two available treatments for childhood cerebral ALD: "Lorenzo's oil" made from olive and rapeseed oil with a very low-fat diet, and stem cell transplantation through a bone marrow transplant. These are treatments that may stop the progression of the disease if diagnosed and treated early, but neither can repair the damage done by ALD once it has already begun. Treatments for the adult form of the disease are more limited. Medications can be prescribed to help relieve symptoms...
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