May is Lupus Awareness Month in the United States

Lupus is a chronic autoimmune disease that can damage any part of the body. With autoimmune diseases, the body’s immune system cannot tell the difference between viruses, bacteria, and other germs and the body’s healthy cells, tissues, or organs. Because of this, the immune system attacks and destroys these healthy cells, tissues, or organs.[i]


Lupus is most common in women between the ages of 18-45, but it also can affect men. It is difficult to know how many people in the United States have lupus, because the symptoms are different for every person. It is estimated that 1.5 million Americans have lupus.[ii]  Other estimates range from 161,000 to 322,000 Americans with systemic lupus erythematosus (SLE).[iii]

Systemic lupus erythematosus (SLE), is the most common type of lupus. SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help to control it. The causes of SLE are unknown, but are believed to be linked to environmental, genetic, and hormonal factors.

Recent studies indicate that lupus incidence rates are almost three times higher in black women than white women and affect one in every 537 young African American women. Minority women tend to develop lupus at a younger age, experience more serious complications, and have higher mortality rates—up to three times the mortality rate of white women. [iv]

In 2015, NACDD led a cooperative effort with the CDC, the Lupus Foundation of American and other stakeholders that included public health professionals, lupus experts, clinicians and individuals living with the disease to develop the first-ever National Public Health Agenda for Lupus to help prioritize public health efforts to improve the care and quality of life for people living with lupus. The Agenda outlines a broad public health approach to lupus diagnosis, disease management, treatment, and research.

Since then, NACDD has collaborated with the American College of Rheumatology (ACR), the Lupus Foundation of America/Georgia Chapter, the Big Bend Rural Health Network, and the University of Alabama to implement a Lupus School Nurse Training and Education Program. A workgroup was formed (including the ACR, NACDD, pediatric rheumatology fellows and rheumatology fellowship program directors, a certified registered nurse practitioner, and representatives from LFA/GA and BBRHN) to develop the training format, to be accompanied by a Lupus Care Plan and the ACR’s Child to Adult Lupus Transition Plan. This year, the project is on track to reach more than 100 school nurses. 

For more information about lupus, please visit our Lupus Program page. Or visit our partners’ pages, the American College of Rheumatology/The Lupus Initiative, the Centers for Disease Control and Prevention’s information on lupus, and the Lupus Foundation of America.

[i] Centers for Disease Control and Prevention accessed March 18, 2020.

[ii]Lawrence, R.C., Felson, D.T., Helmick, C.G., Arnold, L.M., Choi, H., Deyo, R.A., et al, for the National Arthritis Data Workgroup. (2008). Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part II. Arthritis Rheum; 58(1):26–35.

[iii]Helmick, C.G., Felson, D.T., Lawrence, R.C., Gabriel, S., Hirsch, R., Kwoh, C.K., et al, for the National Arthritis Data Workgroup. (2008). Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part IArthritis Rheum; 58(1):15–25.

[iv] Lim, S.S. et al, The Incidence and Prevalence of Systemic Lupus Erythematosus.  Arthritis & Rheumatology 2014,66:369

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