May, 2014: 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. 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 1 in 5,000 births worldwide; and

WHEREAS, A network of worldwide support groups have proved 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 public at large. 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 bring hope for a cure; and

WHEREAS, There is neither routine screening nor a cure for Ehlers-Danlos Syndrome, individuals must seek a diagnosis from knowledgeable health care providers, such as University of Michigan. Individual symptoms must be evaluated and cared for appropriately; physical and occupational therapy evaluation and intervention may be required to address basic life tasks. 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 Michigan; 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 Michigan; and

WHEREAS, In memory of all our families and friends who have died from Ehlers-Danlos Syndrome, the Filber Fight Against EDS Awareness and Support group, and all the network of Ehlers-Danlos Syndrome organizations will continue to educate and raise money for research.

NOW, THEREFORE, I, Rick Snyder, governor of Michigan, do hereby proclaim May as Ehlers-Danlos Syndrome Awareness Month in Michigan.