2014-0251
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. 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 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 help relieve muscle spasms and reduce muscle rigidity, and genetic counseling is highly recommended; and,
WHEREAS, newborn screenings can be an effective way of early diagnosis; allowing the X-ALD child to be monitored and treated before the onset of symptoms.
NOW, THEREFORE, BE IT RESOLVED, THAT WE, THE MEMBERS OF THE ST. CHARLES PARISH COUNCIL AND THE PARISH PRESIDENT, DO HEREBY PROCLAIM THE MONTH OF SEPTEMBER 2014 AS
"ALD AWARENESS MONTH IN ST. CHARLES PARISH"
V.J. ST. PIERRE, JR. CAROLYN K. SCHEXNAYDRE
PARISH PRESIDENT COUNCILWOMAN AT LARGE, DIV. A
JARVIS LEWIS PAUL J. HOGAN, PE
COUNCILMAN AT LARGE, DIV. B COUNCILMAN, DISTRICT IV
TERRELL D. WILSON LARRY COCHRAN
COUNCILMAN, DISTRICT I COUNCILMAN, DISTRICT V
WILLIAM BILLY WOODRUFF TRACI A. FLETCHER
COUNCILMAN, DISTRICT II COUNCILWOMAN, DISTRICT VI
WENDY BENEDETTO JULIA FISHER-PERRIER
COUNCILWOMAN, DISTRICT III COUNCILWOMAN, DISTRICT VII
ALD Awareness Month 2014.pcl