Systemic Lupus Erythematosus (Lupus)
Barbara Segal, MD, has been researching lupus and other autoimmune diseases for her entire medical career. She both treats patients with lupus and researches the disease in hopes of finding new treatments for it.
Autoimmune diseases like lupus can cause the body to attack any of its tissues. In lupus, the immune system can attack many different organs and tissues, causing inflammation, damage, and pain. Lupus predominantly affects young women, especially women of color. Nine out of ten lupus patients are women.
Lupus is very disruptive to those who live with the disease. It often seems to appear suddenly, manifesting with any number of persistent symptoms which can include rashes, joint pain, anemia, fatigue, and headache, among many others. Symptoms may flare up for a period of time, and then subside again only to reappear later. Because of the wide variety of symptoms and their unpredictability, it can be years before a patient is accurately diagnosed with lupus.
The symptoms of lupus can disrupt every part of a person’s life. Persistent fatigue can cause problems at work and at home. Rashes on the face and body can be embarrassing and affect a person’s social well-being. Neurologic symptoms and pain can also interfere with being able to work and carry on normal activities.
The impact of lupus’ symptoms can be minimized if they are carefully and consistently managed by healthcare professionals. Unfortunately, current treatments are not entirely successful in controlling the disease. Side effects do occur in some cases and can be very severe.
Lupus disproportionately affects young women of color. Studies looking at the effect of ethnicity and socioeconomic status have suggested that the risk of kidney failure and death from lupus is higher among persons with lower household income and lower education. Among ethnic groups, previous research has shown that African American women with lupus are the most likely to be lost to follow up after the diagnosis of lupus.
Dr. Segal is exploring possible reasons why this is. One of her research projects looks at the cultural beliefs, lifestyle practices, and socioeconomic status of a diverse group of patients seen at the Hennepin County Medical Center to determine how these factors may be contributing to the increased likelihood of poor outcomes among young women with lupus.
Lupus has a profound effect on a person’s ability to work and to carry on as heads of households. It can be very challenging to keep a job or function well as a caregiver if you are suffering from lupus. The impact of this disease is especially hard on young families because it predominantly affects women in their prime working and motherhood years. The economic costs of lupus are enormous. Two out of three lupus patients report partial or complete loss of income and 25 percent are completely disabled.
Dr. Segal is conducting research that examines the importance of holistic management of lupus; helping women take control of the disease from medical, social, and economic perspectives. Access to resources is important in preventing the disease from evolving from manageable symptoms to more severe complications of the disease.
Fortunately, researchers are beginning to discover the underlying biological processes at work in lupus. A deeper understanding of the disease promises to spur development of new drugs that can improve the way lupus patients manage their symptoms. Researchers have found that certain genes, specifically those involved in the immune response called interferons, are significantly more active in lupus patients as well as in other autoimmune disorders like Sjögren’s syndrome.
With this knowledge, new biologic drugs are being developed for lupus patients. However, even with these new drugs in the pipeline, the biggest challenge to getting lupus under control is disease management. Consistently taking medications is crucial to successfully treating lupus.
