May 2019: Ehlers-Danlos Syndrome Awareness Month

WHEREAS, Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders caused by different underlying abnormalities in collagen. Symptoms vary across types but commonly include joint hypermobility, dislocation, fragile, hyperextensible skin that bruises and scars easily, and tissue fragility. Severe cases can be associated with unpredictable tearing of blood vessels and organs, leading to internal bleeding and other potentially life-threatening complications; and

WHEREAS, Ehlers-Danlos syndromes are often inherited and can affect multiple generations within a family; and

WHEREAS, there is neither routine screening nor a cure for Ehlers-Danlos syndromes. Treatment focuses on managing symptoms and preventing dangerous complications. Early and accurate diagnosis provides opportunities for proper monitoring, timely medical interventions, and an improved quality of life; and

WHEREAS, individuals with Ehlers-Danlos syndromes can sometimes remain undiagnosed for decades, while their symptoms progress and become more difficult to treat. Improved knowledge and recognition of EDS will lead to earlier detection and medical management, thereby reducing the burden of disease and its negative impact on families; and

WHEREAS, continued research is needed to better understand Ehlers-Danlos syndromes. Encouraging further studies can lead to breakthroughs in genetic testing, treatments, and other medical interventions, generating growth in the EDS knowledge base and bringing hope for a cure;

NOW, THEREFORE, in recognition of all families and friends who have been affected by any form of the Ehlers-Danlos syndromes, I, Governor Gretchen Whitmer, governor of the State of Michigan, do hereby proclaim May as Ehlers-Danlos Syndrome Awareness Month.