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What is Lupus

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Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.

At present, there is no cure for lupus. However, lupus can be effectively treated with drugs, and most people with the disease can lead active, healthy lives. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission. Understanding how to prevent flares and how to treat them when they do occur helps people with lupus maintain better health. Intense research is underway, and scientists funded by the NIH are continuing to make great strides in understanding the disease, which may ultimately lead to a cure.

 

Two of the major questions researchers are studying are who gets lupus and why. We know that many more women than men have lupus. Lupus is two to three times more common in African American women than in Caucasian women and is also more common in women of Hispanic, Asian, and Native American descent. African American and Hispanic women are also more likely to have active disease and serious organ system involvement. In addition, lupus can run in families, but the risk that a child or a brother or sister of a patient will also have lupus is still quite low. It is difficult to estimate how many people in the United States have the disease, because its symptoms vary widely and its onset is often hard to pinpoint.

There are several kinds of lupus:

  • Systemic lupus erythematosus (SLE) is the form of the disease that most people are referring to when they say “lupus.” The word “systemic” means the disease can affect many parts of the body. The symptoms of SLE may be mild or serious. Although SLE usually first affects people between the ages of 15 and 45 years, it can occur in childhood or later in life as well. This booklet focuses on SLE.
  • Discoid lupus erythematosus is a chronic skin disorder in which a red, raised rash appears on the face, scalp, or elsewhere. The raised areas may become thick and scaly and may cause scarring. The rash may last for days or years and may recur. A small percentage of people with discoid lupus have or develop SLE later.
  • Subacute cutaneous lupus erythematosus refers to skin lesions that appear on parts of the body exposed to sun. The lesions do not cause scarring.
  • Drug-induced lupus is a form of lupus caused by medications. Many different drugs can cause drug-induced lupus. They include some antiseizure medications, high blood pressure medications, antibiotics and antifungals, thyroid medications, and oral contraceptive pills. Symptoms are similar to those of SLE (arthritis, rash, fever, and chest pain), and they typically go away completely when the drug is stopped. The kidneys and brain are rarely involved.
  • Neonatal lupus is a rare disease that can occur in newborn babies of women with SLE, Sjögren’s syndrome, or no disease at all. Scientists suspect that neonatal lupus is caused in part by autoantibodies in the mother’s blood called anti-Ro (SSA) and anti-La (SSB). Autoantibodies (“auto” means self) are blood proteins that act against the body’s own parts. At birth, the babies have a skin rash, liver problems, and low blood counts. These symptoms gradually go away over several months. In rare instances, babies with neonatal lupus may have congenital heart block, a serious heart problem in which the formation of fibrous tissue in the baby’s heart interferes with the electrical impulses that affect heart rhythm. Neonatal lupus is rare, and most infants of mothers with SLE are entirely healthy. All women who are pregnant and known to have anti-Ro (SSA) or anti-La (SSB) antibodies should be monitored by echocardiograms (a test that monitors the heart and surrounding blood vessels) during the 16th and 30th weeks of pregnancy. It is important for women with SLE or other related autoimmune disorders to be under a doctor’s care during pregnancy. Doctors can now identify mothers at highest risk for complications, allowing for prompt treatment of the infant at or before birth. SLE can also flare during pregnancy, and prompt treatment can keep the mother healthier longer.

Source: National Institute of Health (NIH)

Who Gets Lupus?

The number of people with lupus in the United States has been estimated to be as many as 1.5 million. Anyone can develop lupus, including children, but certain people are more likely to develop the disease. The ALR-funded International SLE Genetics (SLEGEN) Consortium research project has indentified links between specific genes and women with lupus. Nine out of ten people who have lupus are women, and the disease usually strikes during the childbearing years. Lupus is three times more common in African-American women than in Caucasian women and is also more prevalent in women of Latino, Asian, and Native American descent.

What Are the Symptoms of Lupus and How Is it Diagnosed?

Unfortunately, the warning signs of lupus can mimic the warning signs of other diseases. Common symptoms of lupus include persistent low-grade fever, extreme fatigue, and painful or swollen joints. The so-called lupus rash, which often manifests as a butterfly-shaped reddish or purplish rash across the bridge of the nose and cheeks, is another common medical sign. However, no single test can be used to diagnose lupus, and it may take several months or years after symptoms first appear for doctors to make a definitive diagnosis. There are blood tests that a doctor can use to help diagnose lupus, but none of these tests are definitive.

Download our Lupus Fact Sheet for more information


*The Alliance for Lupus Research thanks Genentech, GlaxoSmithKline, and Human Genome Sciences for their generous support of our Spanish translation project.


1.5 million

people in the U.S. have Lupus.

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