SR0549 100TH GENERAL ASSEMBLY

SR0549 LRB100 12942 MST 26992 r

SENATE RESOLUTION

WHEREAS, Cystinuria occurs in individuals in which a rare genetic defect prevents the body from regulating amino acid concentrations, subsequently leading to elevated levels of cystine and the formation of cystine stones in the kidney, ureter, and bladder; and

WHEREAS, The American Urological Association recognizes Cystinuria as the most common monogenic kidney stone disorder; and

WHEREAS, The majority of Cystinuria patients start to suffer from chronic cystine stone formation before the age of 20; and

WHEREAS, Cystinuria patients often endure episodes of debilitating pain (typically known as renal colic), nausea, vomiting, and recurrent urinary tract infections; and

WHEREAS, The majority of Cystinuria patients will require numerous stone removal procedures and surgeries; and

WHEREAS, Studies have demonstrated Cystinuria patients have worse health related quality of life than the general population, specifically in areas of general health, bodily pain, and mental health; and

WHEREAS, Cystinuria patients may suffer from life threatening complications, such as hypertension, renal insufficiency, end stage renal disease, and the need for a kidney transplant; and

WHEREAS, The majority of Cystinuria patients forming recurrent stones will develop some form of chronic kidney disease in their lifetime; and

WHEREAS, There is no cure for Cystinuria, treatment options significantly reduce medically necessary surgeries and some patients can live a stone-free life; and

WHEREAS, Cystinuria can be diagnosed from analysis of a 24-hour urine test; and

WHEREAS, Detection may be improved by increased education and screening, as many patients do not receive a diagnosis until after enduring one or more stone episodes; and

WHEREAS, Early diagnosis is important to the long-term management of a Cystinuria, which can potentially limit permanent kidney damage and persevere maximal kidney function; and

WHEREAS, One in every 10,000 Americans are believed to be genetically at risk for Cystinuria; and

WHEREAS, Cystinuria has been documented as a leading risk factor for one of the top most common forms of kidney stones; and

WHEREAS, Kidney stone experts cite the economic burden in the United States for providing care for individuals, of working age, with kidney stones to be $5.3 billion dollars in the year 2000; and

WHEREAS, Doctors at Southern Illinois University's School of Medicine have world-leading expertise on Cystinuria; therefore, be it

RESOLVED, BY THE SENATE OF THE ONE HUNDREDTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we recognize June 24, 2017 as "National Cystinuria Awareness Day"; and be it further

RESOLVED, That we encourage steps be taken to raise awareness of and increase public knowledge about Cystinuria, to inform all people in Illinois about the dangers of Cystinuria; to disseminate information on the importance of early diagnosis and management of Cystinuria patients; and to support research funding of Cystinuria at Illinois medical research centers to improve screening and treatment for Cystinuria, to support efforts that may improve the quality of life for Cystinuria patients, and to develop a cure for Cystinuria; and be it further

RESOLVED, That we call on the people of Illinois, interest groups, and affected persons to promote awareness of Cystinuria, to take an active role in the fight against this devastating disease, and to observe National Cystinuria Awareness Day with appropriate ceremonies and activities.