By | May 23, 2016

New York State Assemblyman Fred W. Thiele, Jr. (I, D, WF-Sag Harbor) announced today that the New York State Assembly and Senate have passed resolutions memorializing Governor Andrew Cuomo to proclaim May 2016 as Lupus Awareness Month in New York State.   The Legislature joins the Lupus Agencies of New York State in their efforts to increase public awareness of Lupus symptoms and health effects, and to increase support for Lupus education and research programs.  The Lupus Agencies of New York State held their Annual Lupus Awareness Day on May 18, 2016 at the State’s Capitol to call public attention to Lupus—a disease that affects an estimated 105,400 New Yorkers, 1.5 million Americans, and 5 million people worldwide; often causing debilitating symptoms.

The Lupus Agencies of New York State are dedicated to improving the quality of life for individuals with Lupus and their loved ones by providing education, support and outreach services, and promoting programs of awareness, advocacy, and research.  Kathleen A. Arntsen, spokesperson for the Lupus Agencies of New York State stated, “We applaud Senator Joseph Griffo as the Prime Senate Sponsor and Assemblyman Fred W. Thiele, Jr. as the Prime Assembly Sponsor of the Lupus Resolution and all of our legislative champions who passed this important resolution for the Eighth Annual Lupus Awareness Month in New York State.  We are excited that Lupus is finally getting the recognition it deserves.”

“The more public awareness we can bring to Lupus, the more hope for relief we can offer the millions of people worldwide who suffer from this devastating disease,” State Senator Joseph Griffo said.  “Too little is understood about Lupus, and too many people don’t even realize they have it, which often prevents these individuals from getting the proper medical attention they need sooner rather than later.  The only way we can get closer to a cure is to recognize the prevalence of Lupus among our people, and to encourage the level of funding support and research this disease deserves.  In recognition of May as Lupus Awareness Month, I am proud to partner with the Lupus Agencies of New York State toward achieving this important goal.”

Assemblyman Fred W. Thiele, Jr. stated, “Lupus is a chronic, autoimmune disease.  While Lupus can affect anyone, 90% of people diagnosed with Lupus are women.  Lupus is 2 to 3 times more prevalent among women of color.  Yet public awareness lags.  Among Americans ages 18-34, 72% of those polled have either not heard about Lupus or know little or nothing about Lupus beyond the name.  It is estimated that Lupus affects 1.5 million Americans.  My daughter, Josephine, is one of those 1.5 million.  She is currently finishing graduate school at Boston University to pursue a career in the field of health and nutrition.  She is proof that with a proper diagnosis and treatment and armed with the necessary information, that one can live a full and successful life despite this illness.”

Lupus is a chronic inflammatory autoimmune disease in which a triggering agent causes the immune system to attack the patient’s own tissue and can affect virtually any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood and blood vessels.  It is more common than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis and there is no known cause or cure.   Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is unpredictable, highly individualized, debilitating and potentially fatal.  Each year thousands of people are newly diagnosed with Lupus, the great majority of whom are young people in the prime of their lives, and 90% of whom are women.

Lupus is more prevalent among African-Americans, Hispanics, Native Americans, and Asians and suffers from the lack of awareness more than any other major disease.  Not only is the public knowledge of Lupus lacking, but even health professionals can be unaware of the symptoms and effects of Lupus, resulting in delayed diagnosis and proper medical intervention and demonstrating the urgent need for increased public and professional awareness of the symptoms of Lupus.  Early diagnosis and treatment are vital components in reducing the physical and economic impact of the disease.

The most common symptoms of Lupus are joint swelling, joint and muscle pain, extreme fatigue, fever, and skin rashes on the face, neck and scalp.  Other symptoms can include sensitivity to sunlight, hair loss, fingers turning white or blue in the cold, low blood counts, and mouth or nose ulcers.  Symptoms that might indicate vital organs are affected include chest pain on deep breathing (pleurisy), excessive protein in the urine, coronary artery disease, and seizures.

Lupus research is under-funded in comparison with diseases of comparable magnitude and severity.  Current treatments for Lupus are not adequate; many are toxic and cause detrimental side effects with long-term use and only 4 drugs are approved for Lupus so many treatments are off-label.  No single test exists resulting in many individuals suffering more serious complications before a diagnosis is reached.

The purpose of the Annual Lupus Awareness Day is to help educate New York State’s elected policymakers, state agency officials, health care professionals, and the general public about the disease Lupus and the need for research program support to develop better diagnostic tests and safer, more effective treatments; and ultimately, discover the cure to eradicate this devastating disease.

For more information about Lupus, the Lupus Agencies of New York State or Lupus Awareness Day call 315-829-4272 or toll free 1-866-258-7874.

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