HR1116 94TH GENERAL ASSEMBLY

HR1116 LRB094 20104 LJB 57729 r

HOUSE RESOLUTION

WHEREAS, Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders characterized by excessive looseness and instability of the joints, fragile and hyperelastic skin that bruises, scars, and tears easily, and major blood vessels that can disintegrate catastrophically; the overall prevalence of all types of Ehlers-Danlos Syndrome is estimated at 1 in 5,000 births worldwide, representing over 75,000 Americans and 1.5 million globally; and

WHEREAS, Some forms of Ehlers-Danlos Syndrome involve serious, life-threatening, or fatal complications; major blood vessels, organs, and the aorta can tear or rupture unpredictably, causing acute pain, internal bleeding, shock, and premature death; life can be foreshortened for those with this vascular type: the average life span is only to the forties and tragically, many die in their teens; and

WHEREAS, It is the mission Ehlers-Danlos National Foundation (EDNF) to provide information and advocacy for people living with Ehlers-Danlos Syndrome and to provide a network of support and knowledge to the medical profession, greater healthcare community, and public at large; currently, there is little research dedicated to EDS outside of research funded by EDNF; increased interest, study, and understanding of EDS and its genetic connections will generate breakthroughs that may provide better screening, treatments, and a cure; and

WHEREAS, There is neither screening nor a cure for Ehlers-Danlos Syndrome and individual symptoms must be evaluated and cared for appropriately; physical and occupational therapy, evaluation, and intervention by rehabilitation specialists is often required to address basic life tasks; appropriate therapy and treatment is especially essential for EDS in children; early and accurate diagnosis will provide the opportunity to create life-saving emergency medical plans, ensure proper cardiac monitoring, and allow for the optimum quality of life for EDS families; and

WHEREAS, Ehlers-Danlos Syndrome is frequently misdiagnosed or undiagnosed for decades, resulting in greater discomfort and disability; the vascular form may only be recognized with the advent of an often-fatal medical emergency; for some, the diagnosis only accompanies autopsy; earlier recognition can prevent many of these premature and tragic deaths and allow earlier and more effective management of EDS; and

WHEREAS, Increased awareness of Ehlers-Danlos Syndrome in the medical profession will allow earlier diagnosis, treatment, and care to ensure hope of a better life and participation in society; the reduced disability, pain, and expense will offer tangible positive effects and an enhanced quality of life for EDS families; and

WHEREAS, It is imperative that additional funding be dedicated to research this under­recognized and under-diagnosed condition; by fostering and funding further studies of EDS, new understanding of syndrome processes and therapeutic interventions can be acquired; current work at the National Institutes of Health and other research institutions can be expanded and increased, generating an increased knowledge base; and

WHEREAS, In memory of all of our families and friends who have died from Ehlers-Danlos Syndrome, the Ehlers-Danlos National Foundation will continue to educate and fund research so that someday we will see a brighter day; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-FOURTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we designate the month of May 2006 as Ehlers-Danlos Syndrome Awareness Month; and be it further

RESOLVED, That a suitable copy of this resolution be sent to the Ehlers-Danlos Foundation.