Partnerships Result in Improved Lupus Data Collection

Since 2015, NACDD has collaborated with the American College of Rheumatology (ACR), The Lupus Initiative, 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 National Public Health Agenda for Lupus.  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. 

A training program has been developed for school nurses, complimented by an ACR developed Lupus Care Plan and Transition to Adult Care Plan for use by the nurses, with plans to expand training opportunities, starting in October 2019.

To bring home how important the work is we are doing, the co-chair of the Georgia Council on Lupus Education and Awareness conducted a presentation on lupus from the patient perspective to the entire DeKalb County School Health staff.  During the Q&A, one nurse stated that she took all of the information from the first school nurse lupus presentation in March, went to a rheumatologist and was diagnosed with lupus. Another nurse stated that she was able to have a parent send their child to a rheumatologist for a positive diagnosis.

Although lupus is most common in women between the ages of 18-45, it can affect men also.  Lupus can affect almost any organ in the body. The symptoms of lupus may differ from person to person. For example, one woman with lupus may have swollen knees and fever while another 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.

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