About Lupus


Lupus Erythematosus is an extremely complex, difficult to diagnose, life altering, and potentially fatal disease. It is an autoimmune disease in which a triggering agent causes the immune system to actually attack the patient’s own tissue causing inflammation in the skin, joints, blood, heart, lungs, brain, and kidneys. It can cause severe joint and muscle pain, extreme exhaustion, fevers, skin rashes, hair loss, and anemia and can attack vital organs. It is more common than AIDS, sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis and it is estimated that there are 300,000 to 1.5 million people with Lupus in the United States. It disproportionately affects people of color, especially African Americans, Asians, Hispanics, and Native Americans and like most autoimmune diseases is more prevalent in females. While approximately eight of ten new cases of lupus develop among women of childbearing age, men, women, and children also develop the disease. It ranges from mild to life threatening and is a leading cause of kidney disease, stroke, and premature cardiovascular disease in young women and there is no known cause or cure.  

Most lupus patients have suffered an average of four years prior to being diagnosed because there is no single test that identifies lupus. A diagnosis is usually made through a process of observation and elimination. Many patients can become very ill before a diagnosis is reached. Lupus suffers from the lack of awareness more than any other major disease. It affects females over 90% of the time, and the majority of those it strikes do not look ill. Lupus is a heterogeneous disease with symptoms varying from one person to the next, therefore most treatments must be individualized to each patient.

Existing treatments for lupus are not adequate. Some are toxic and cause detrimental side effects with long-term use. The first drug developed specifically for lupus was approved by the U.S. Food and Drug Administration (FDA) in March 2011 after a 50 year drought of no approvals. There are only 4 drugs currently approved for lupus so the majority of treatments are considered off-label. Since it is a complicated multi-system disease, lupus patients must regularly see several different specialists making it an expensive chronic illness.

It is estimated that one in four persons with lupus is disabled and one in five receives their medical care through Medicare or Medicaid. Lupus and other autoimmune diseases are the fourth leading cause of disability among women.  The economic burden to society is staggering between the costs of disability income payments, government-sponsored medical care and lost tax revenue. 

Lupus is the prototypical autoimmune disease as it can affect virtually any part of the body. Since there are over 100 other autoimmune and related disorders, the benefits of lupus research could be far reaching. Yet present funding for lupus research is insufficient.  Lupus strikes young people in the prime of their lives and drastically impacts their dreams and their future. For too long, those affected by lupus have been disappointed with the lack of progress being made to discover the cause, improved treatments, and cure for lupus. 

The prognosis for lupus patients can become more promising. Better diagnostic techniques and evaluation methods combined with a conservative use of medications will give physicians the tools to more effectively manage disease symptoms and complications. Many lupus patients and their loved ones are also beginning to take a more active role in their own health care by participating in lupus education programs and developing strong coping and self-management skills. Elevating the public’s awareness of lupus also increases the number of patients who seek medical attention and leads to earlier diagnosis and treatment, and a more positive prognosis. Lupus patients who empower themselves by developing a strong knowledge of their disease as well as a reliable support system increase their chances for a better disease outcome and enhanced quality of life. 


NIH ACTION PLAN FOR LUPUS RESEARCH

In response to a request from the Congressional Lupus Caucus, 
the National Institutes of Health (NIH) has
 
released an 
Action Plan for Lupus Research. This report was a 
collaborative effort, led by the National Institute of Arthritis 
and Musculoskeletal and Skin Diseases (NIAMS) on
 
behalf of the NIH. It represents a synthesis of internal 
and external input on
 promising future research 
directions to improve the lives of people with lupus.

In 2005, the House Appropriations Committee directed the NIH to
develop a plan to guide the nation's investment in lupus research. 
In response, The Future Directions of Lupus Research was released 
in 2007.  In July 2014, the Congressional Lupus Caucus requested 
that NIAMS, as the lead agency of the Lupus Federal Working Group,
develop a new coordinated action plan for lupus research.

"We have made great strides in our understanding of lupus 

and its treatment since the publication of the 2007 report noted NIAMS 
Director Stephen I. Katz, M.D., Ph.D. "Yet, much work remains to be done."

The plan was developed collaboratively among the NIH Institutes and
Centers with an interest and investment in lupus research, with 
extensive input from the broader community of researchers, health
care providers, patients, and the Lupus Federal Working Group.
Kathleen Arntsen, Dr. Betty Diamond and Dr. Marc Chevrier gave
input on behalf of Lupus and Allied Diseases Association during the
process. The plan highlights many opportunities to increase our
understanding of lupus at the molecular, individual, and population
levels, which ultimately should lead to safer and more effective
treatments and, eventually, curative strategies. In addition, it will
help to inform priority-setting processes among all lupus-related
organizations — federal, private, and non-profit — and serve
as a guide for lupus investigators.



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Contact Us:
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY  13478
Telephone 315-829-4272
Fax 315-829-4272
Toll free 1-866-258-7874 or 1-866-2-LUPUS-4