May 2018: Ehlers-Danlos Syndrome Awareness Month

WHEREAS, Ehlers-Danlos Syndrome (EDS) & Hypermobility Spectrum Disorder (HSD) are a group of genetic disorders involving mutations in connective tissue characterized by instability and dislocations of the joints; fragile and often hyperelastic skin that bruises, scars, and tears easily; and unpredictable arterial and organ rupture causing acute pain, excessive internal bleeding, stroke and premature death; and,

WHEREAS, there is neither a routine screening nor a cure for Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, which are a group of hereditary conditions often affecting entire families. Individual symptoms must be evaluated and treated as they arise by the often numerous specialists a person with EDS/HSD must see. Early and accurate diagnosis can provide the opportunity to create life-saving emergency medical plans, ensure proper monitoring, and improve quality of life; and,

WHEREAS, Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder are frequently misdiagnosed and often go undiagnosed for decades, sometimes generations, resulting in greater discomfort and disability for individuals affected and their children. Improved knowledge of EDS/HSD can prevent families from suffering from tragic deaths while also providing effective management of debilitating symptoms; reducing disability, pain, and medical expenses for the EDS/HSD families in the state of Michigan; and,

WHEREAS, at this stage there is little research being undertaken into Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, however, there continues to be hope of increased breakthroughs in genetic testing and research. By encouraging further studies into Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder, 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 EDS/HSD knowledge base while bringing hope for a cure; 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 2018 as Ehlers-Danlos Syndrome Awareness Month in Michigan.