Governor LePage Proclaims April 2012 as Fabry Disease Awareness Month
April 1, 2012
For Immediate Release: April 1, 2012
Contact: Adrienne Bennett (207) 287-2531
AUGUSTA - Governor Paul LePage issued the following proclamation declaring April 2012 as Fabry Disease Awareness Month:
"WHEREAS, Fabry Disease is a rare, progressive, destructive, and life-threatening inherited genetic disorder that causes children and adults to suffer a cascade of life-altering symptoms such as pain, decreased ability to perspire, intolerance to heat and exercise, unexplained fevers, gastrointestinal upset, and excess school and work absences. In progresses to include hearing loss, lung disease, heart disease, kidney disease, cerebrovascular disease, and other symptoms. It causes premature death in adults due to heart attacks, strokes and kidney failure; and
WHEREAS, Fabry disease is caused by a deficient activity of the lysosomal enzyme alpha-galactosidase A that causes insufficient breakdown of lipids. Lipids build up to harmful levels in the body caused causing lysosomal and cellular dysfunction; and
WHEREAS, there is treatment for Fabry disease approved by the FDA in April, 2003 that must reach thousands of undiagnosed people. Fabry disease is severely under-recognized and misdiagnosed . When diagnosed, it is often too late after irreversible damage occurs. Increased physician and family education are critical to increase disease recognition; and
WHEREAS, the current estimate of classic Fabry disease incidence in the U.S. is 1 in 50,000 males and twice as many females with a very high but lesser percentages of females with disease symptoms. Further, recent newborn screening studies in other countries suggest there are likely to be 20 times as many males with late-onset Fabry disease in the U.S.; and
WHEREAS, an enzyme assay test for males and molecular DNA test for females can confirm Fabry disease. Together, we can raise awareness to fight this tragic but treatable disorder.
NOW, THEREFORE, I, Paul R. LePage, the Governor of the State of Maine, do hereby proclaim April 2012 as
FABRY DISEASE AWARENESS MONTH
throughout the State of Maine, and urge all citizens to recognize this observance."