Ehlers-Danlos Syndrome Awareness Month

WHEREAS, Ehlers-Danlos Syndrome is a group of genetic disorders involving mutations in connective tissue characterized by looseness, instability and dislocations of the joints, fragile and often hyperelastic skin that bruises, scars and tears easily, unpredictable arterial and organ rupture causing acute pain, excessive internal bleeding, shock, stroke and premature death; and

WHEREAS, there are six major types of Ehlers-Danlos Syndrome that are characterized by distinctive features with life being shortened for individuals with the vascular type due to the possibility of arterial or organ rupture; it is estimated the prevalence of all types of Ehlers-Danlos Syndrome is one in 5,000 births worldwide; and

WHEREAS, a network of worldwide support groups have proven to be of great benefit to individuals with Ehlers-Danlos Syndrome; not only do these organizations put people in touch with other individuals managing life with Ehlers-Danlos Syndrome, they are also vital in providing up-to-date information to the medical profession and the public at large; and

WHEREAS, at this stage, there is little research being undertaken into Ehlers-Danlos Syndrome; however, there continues to be hope that genetic testing and research will be increased; by encouraging further studies of Ehlers-Danlos Syndrome, new understanding, interventions and improved treatments can be acquired; current work at the National Institutes of Health and other research institutions can be expanded and increased, generating a growth in the knowledge base and bringing hope for a cure; and

WHEREAS, there is neither routine screening nor a cure for Ehlers-Danlos Syndrome; individuals must seek a diagnosis from a knowledgeable health care provider; individual symptoms must be evaluated and cared for appropriately; physical and occupational therapy evaluation and intervention may be required to address basic life tasks; and

WHEREAS, early and accurate diagnosis can provide the opportunity to create life-saving emergency medical plans, ensure proper monitoring and improve quality of life and support for Ehlers-Danlos Syndrome families in the state of Alabama; and

WHEREAS, Ehlers-Danlos Syndrome is frequently misdiagnosed or undiagnosed for decades, sometimes generations, resulting in greater discomfort and disability for individuals and offspring; improved knowledge of the vascular form can prevent generations of premature and tragic deaths and increased knowledge of all types allow earlier and more effective management of Ehlers-Danlos Syndrome increasing hope of a better quality of life, increased participation in society, reduced disability, pain and medical expense for Ehlers-Danlos Syndrome families in our state:

NOW, THEREFORE, I, Robert Bentley, Governor of Alabama, do hereby proclaim the month of May 2013, as

Ehlers-Danlos Syndrome Awareness Month

in the state of Alabama.