May is Lupus Awareness Month in the United States. Lupus is most common in women between the ages of 18-45, but it can affect men also. Lupus can affect almost any organ in the body. The symptoms of lupus also differ from person to person. For example, one woman with lupus may have swollen knees and fever. Another woman may be tired all the time or have kidney trouble. Someone else may have rashes. Over time, new symptoms can develop, or some symptoms may happen less often. Lupus symptoms also usually come and go, meaning that you don’t have them all of the time.
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 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 1 in 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. 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 (Agenda) 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, the Georgia Council on Lupus Education and Awareness and the Big Bend Rural Health Network to develop state-based plans to address lupus that reflect the strategies identified in the Agenda. These partnerships have resulted in improved data collection, as questions about lupus were added to the 2019 BRFSS in both states, and every school district in Florida and two in Georgia now collect data on students with a diagnosis of lupus. The school health results should be available later this year. Lupus Care Plans and Transition to Adult Care Plans were developed for use by school nurses, and recent Georgia-based trainings received very enthusiastic evaluations from the 55 nurse participants. For more information about lupus, visit www.chronicdisease.org/page/Autoimmune, www.cdc.gov/lupus or www.thelupusinitiative.org.