Bill Text: IL SR0549 | 2017-2018 | 100th General Assembly | Introduced

Bill Title: Recognizes June 24, 2017 as "National Cystinuria Awareness Day". Encourages steps be taken to raise awareness of and increase public knowledge about Cystinuria. Calls on the people of Illinois, interest groups, and affected persons to observe National Cystinuria Awareness Day with appropriate ceremonies and activities.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Introduced) 2017-05-29 - Referred to Assignments [SR0549 Detail]

Download: Illinois-2017-SR0549-Introduced.html

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2 WHEREAS, Cystinuria occurs in individuals in which a rare
3genetic defect prevents the body from regulating amino acid
4concentrations, subsequently leading to elevated levels of
5cystine and the formation of cystine stones in the kidney,
6ureter, and bladder; and
7 WHEREAS, The American Urological Association recognizes
8Cystinuria as the most common monogenic kidney stone disorder;
10 WHEREAS, The majority of Cystinuria patients start to
11suffer from chronic cystine stone formation before the age of
1220; and
13 WHEREAS, Cystinuria patients often endure episodes of
14debilitating pain (typically known as renal colic), nausea,
15vomiting, and recurrent urinary tract infections; and
16 WHEREAS, The majority of Cystinuria patients will require
17numerous stone removal procedures and surgeries; and
18 WHEREAS, Studies have demonstrated Cystinuria patients
19have worse health related quality of life than the general
20population, specifically in areas of general health, bodily

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1pain, and mental health; and
2 WHEREAS, Cystinuria patients may suffer from life
3threatening complications, such as hypertension, renal
4insufficiency, end stage renal disease, and the need for a
5kidney transplant; and
6 WHEREAS, The majority of Cystinuria patients forming
7recurrent stones will develop some form of chronic kidney
8disease in their lifetime; and
9 WHEREAS, There is no cure for Cystinuria, treatment options
10significantly reduce medically necessary surgeries and some
11patients can live a stone-free life; and
12 WHEREAS, Cystinuria can be diagnosed from analysis of a
1324-hour urine test; and
14 WHEREAS, Detection may be improved by increased education
15and screening, as many patients do not receive a diagnosis
16until after enduring one or more stone episodes; and
17 WHEREAS, Early diagnosis is important to the long-term
18management of a Cystinuria, which can potentially limit
19permanent kidney damage and persevere maximal kidney function;

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1 WHEREAS, One in every 10,000 Americans are believed to be
2genetically at risk for Cystinuria; and
3 WHEREAS, Cystinuria has been documented as a leading risk
4factor for one of the top most common forms of kidney stones;
6 WHEREAS, Kidney stone experts cite the economic burden in
7the United States for providing care for individuals, of
8working age, with kidney stones to be $5.3 billion dollars in
9the year 2000; and
10 WHEREAS, Doctors at Southern Illinois University's School
11of Medicine have world-leading expertise on Cystinuria;
12therefore, be it
14ASSEMBLY OF THE STATE OF ILLINOIS, that we recognize June 24,
152017 as "National Cystinuria Awareness Day"; and be it further
16 RESOLVED, That we encourage steps be taken to raise
17awareness of and increase public knowledge about Cystinuria, to
18inform all people in Illinois about the dangers of Cystinuria;
19to disseminate information on the importance of early diagnosis
20and management of Cystinuria patients; and to support research

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1funding of Cystinuria at Illinois medical research centers to
2improve screening and treatment for Cystinuria, to support
3efforts that may improve the quality of life for Cystinuria
4patients, and to develop a cure for Cystinuria; and be it
6 RESOLVED, That we call on the people of Illinois, interest
7groups, and affected persons to promote awareness of
8Cystinuria, to take an active role in the fight against this
9devastating disease, and to observe National Cystinuria
10Awareness Day with appropriate ceremonies and activities.