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, inability to perspire, intolerance to heat and exercise, unexplained fevers, chronic gastrointestinal upset, chronic fatigue, anxiety and depression; and

WHEREAS, it progresses to include hearing loss, lung disease, heart disease, kidney disease, cerebrovascular disease and other symptoms, and it often causes premature death in adults due to heart attacks, strokes and kidney failure; and

WHEREAS, Fabry disease is caused by deficient activity of the lysosomal enzyme alpha-galactosidase A that causes insufficient breakdown of lipids; lipids build up to harmful levels in the body causing lysosomal and cellular dysfunction; and

WHEREAS, there is an approved treatment for Fabry disease that must reach people who know they have Fabry disease as well as thousands of people who have not yet been recognized and diagnosed; Fabry disease is severely under-recognized and misdiagnosed; and

WHEREAS, the most common estimate of classic Fabry disease incidence is about 1 in 50,000 males; because of its x-chromosome inheritance pattern, twice as many females are potentially affected but with a random, more varied distribution of disease symptoms than classic males; and

WHEREAS, further, recent newborn screening studies in other countries and pilot programs in the United States suggest there are many times more people with Fabry disease than current incidence rates of classic disease indicate:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim the month of April 2014, as

Fabry Disease Awareness Month

in the state of Alabama.