May 2021: Ehlers-Danlos Syndrome Awareness and Hypermobility Spectrum Disorder Awareness Month

WHEREAS, Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders caused by different underlying abnormalities in collagen; and,

 

WHEREAS, EDS affects more than one in 5,000 people, including both males and females of every age and race; and,

 

WHEREAS, symptoms vary across types but commonly include joint hypermobility and 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, Hypermobility Spectrum Disorder (HSD) is diagnosed when the musculoskeletal complications of joint hypermobility and join instability, such as joint movement beyond the normal range, join pain, and dislocations, arise in a person who does not have the defining features of an underlying syndrome such as EDS or other heritable disorders of connective tissue; and,

 

WHEREAS, in addition, several related disorders are observed in a number of people with EDS and with HSD, which can add complexity to the presentation of their condition and its management; 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 and Hypermobility Spectrum Disorder. Encouraging further studies can lead to breakthroughs in genetic testing, treatments, and other medical interventions, generating growth in the knowledge base and bringing hope for a cure;

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim May 2021 as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Awareness Month in Michigan.