May 2024: Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month

WHEREAS, Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders that together affect 1 in 5,000 people. Each type of EDS has its own set of symptoms, but some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility; and,

WHEREAS, hypermobility spectrum disorder (HSD) is diagnosed when an individual’s joint hypermobility and instability cannot be explained by EDS or another underlying condition; 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 EDS. Treatment focuses on managing symptoms and preventing dangerous complications. Early and accurate diagnosis provides opportunities for proper monitoring, timely medical interventions, and improved quality of life; and,

WHEREAS, individuals with EDS 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 EDS. 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, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim May 2024 as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month in Michigan.