About Lupus

 

Lupus Erythematosus is an extremely complex, difficult to diagnose, life altering, and potentially fatal condition. It is an autoimmune disease in which a triggering agent causes the immune system to actually attack the person’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 322,000 to 1.5 million people with lupus in the United States.

Lupus 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 people with lupus 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 clinical observation and elimination. Many individuals 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.

Existing treatments for lupus are not adequate. Some are toxic and cause detrimental side effects with long-term use. The first and only 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 four drugs currently approved for lupus so the majority of treatments are considered off-label. Since it is a complicated multi-system disease, people with lupus must regularly see several different specialists making it an expensive chronic illness.

It is estimated that one in three 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 greatly disappointed with the lack of progress being made to discover the cause, better diagnostic tests, improved treatments, and cure for lupus.

 

The prognosis for people with lupus 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 people with lupus 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 people who seek medical attention and leads to earlier diagnosis and treatment, better outcomes, and a more positive prognosis. People with lupus 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. 


Lupus Facts

 

  • Lupus is an extremely complex chronic inflammatory autoimmune disease in which a triggering agent causes the immune system to dysregulate and attack the patient’s own tissue affecting virtually any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood and blood vessels.  

  • There is no known cause or cure for lupus.  

  • Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is highly individualized, extremely volatile, debilitating, life-diminishing, and potentially fatal.  

  • By the most conservative estimates, there are at least 322,000 Americans with definite or probable lupus. Recent independent surveys have suggested a prevalence as high as 1.5 million.[1]  

  • Lupus affects women 9 times more often than men,[2] with eighty percent of new cases developing between the ages of 15 and 44 during child-bearing years or prime of life.[3] 

  • Ninety percent of those affected are women; however, men and children are also diagnosed with lupus.[4] 

  • Lupus disproportionately affects women of color in the United States; it is 2 to 3 times more common among African-Americans, Hispanics and Latinos, Asians, and Native Americans.[5] 

  • Minority women tend to develop lupus at a younger age, experience more serious complications, and have higher mortality rates—up to 3 times the incidence and mortality of Caucasians.[6] 

  • It is estimated that as many as one in every 250 African American women in America has lupus.[7] 

  • Lupus is an unpredictable condition in which symptoms come and go (flares) and complications can suddenly arise.

  • No single test exists to diagnose lupus, resulting in many patients suffering more serious complications before a diagnosis is reached. 

  • Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom.[8]

  • Lupus profoundly disrupts working lives as disease onset typically coincides with critical years for education and career advancement.

  • Thirty-three percent of people with lupus in the US are on work disability.[9]  

  • The annual per patient cost to employers, including medical care, work absence and disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease.[10]
     

 

[1] National Institute of Arthritis and Musculoskeletal and Skin Diseases National Institutes of Health Action Plan for Lupus Research, 2015

[2] Hahn BH, Wallace, DJ The epidemiology of systemic lupus erythematosus. In Dubois’ Lupus Erythematosus (5th Edition). Philadelphia: Williams & Wilkins, 1997

[3] Wallace DJ, The Lupus Book: A Guide for Patients and Families. New York: Oxford University Press, 1995

[4] Hahn, BJ & Wallace DJ, ibid,

[5] National Institute of Arthritis and Muscoloskeletal and Skin Diseases, National Institutes of Health. Strategic Plan for Reducing Health Disparities. 2006.

[6] Sacks JJ, Helmick CG, Langmaid G, Sniezek JE, Centers for Disease Control and Prevention, ibid.

[7] Harley JB, Kelly JA. Genetic basis of systemic lupus erythematosus: a review of the unique genetic contributions in African Americans. Journal of the National Medical Association 2002;94(8):670-677.

[8] Zonana-Nacach A, Roseman JM, McGwin G Jr, Friedman AW, Baethge BA, Reveille JD, Alarcon GS. Systemic lupus erythematosus in three ethnic groups. VI: factors associated with fatigue within 5 years of criteria diagnosis. LUMINA Study Group. LUpus in MInority populations: NAture vs Nurture. Lupus. 2000;14:101–109. doi: 10.1191/096120300678828046.

[9] Baker K, Pope J. Employment and work disability in systemic lupus erythematosus: a systematic review. Rheumatology 2009, 48:281.

[10] Demas KL, Costenbader KH. Curr Opin Rheumatol. 2009, 21:102.



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 Groupdevelop 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, healthcare providers, patient stakeholders, and the Lupus Federal Working Group. President & CEO Kathleen Arntsen, Dr. Betty Diamond and Dr. Marc Chevrier gave input on behalf of Lupus and Allied Diseases Association (LADA) 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. 

 

              
     

 

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
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