Ehlers-Danlos Syndrome Awareness Month

WHEREAS, Ehlers-Danlos syndrome is a group of inherited disorders characterized by excessive instability of the joints; fragile and hyper-elastic skin that bruises, scars and tears easily; and easily damaged blood vessels; and

WHEREAS, the overall prevalence of all types of Ehlers-Danlos syndrome is estimated at 1 in 5,000 worldwide, representing 75,000 Americans and 1.5 million individuals globally; and

WHEREAS, classic and hypermobile forms of Ehlers-Danlos syndrome often manifest in extremely fragile skin with poor wound healing; severe gastrointestinal, dental and ocular problems; and an abnormally large range of joint movement that may lead to frequent dislocations of small and large joints, eventually causing severe pain, surgical intervention and disability; and

WHEREAS, some types of Ehlers-Danlos syndrome may cause life-threatening neurological, respiratory and cardiovascular complications, with the potential of major blood vessels, organs and the aorta unpredictably tearing or rupturing; and

WHEREAS, though there is currently no known cure for Ehlers-Danlos syndrome; screening is available, and individual symptoms must be properly evaluated and treated; and

WHEREAS, early and accurate diagnosis will provide the opportunity to create life-saving emergency medical plans, ensure proper cardiac monitoring, and allow for the optimum quality of life for those with Ehlers-Danlos syndrome; and

WHEREAS, many physicians worldwide are unaware of the symptoms and health effects of Ehlers-Danlos syndrome, causing people to suffer for many years before they obtain a correct diagnosis and are able to receive effective treatment; and

WHEREAS, there is a deep, unmet need to increase awareness in communities worldwide of the debilitating impact of Ehlers-Danlos syndrome:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim May 2011, as

Ehlers-Danlos Syndrome

Awareness Month

in the state of the Alabama.

Given Under My Hand and the Great Seal of the Office of the Governor at the State Capitol in the City of Montgomery on the 23rd day of May 2011.

      

Governor Robert Bentley