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Lupus Myths and Misconceptions

Lupus is a chronic, autoimmune disease that causes the immune system to attack healthy tissue such as the skin, joints, kidneys, brain and other organs. The symptoms and severity of the disease can differ from person to person. It is important for you to get the facts about lupus to learn all you can. Knowing the myths and misconceptions about the disease will help you understand the condition, how to speak to friends and family, and speak to your doctor about the latest treatments.

Myths about lupus

Myth #1: Lupus is a rare disease.

Not at all. At least 1.5 million people in the United States and 5 million people worldwide are living with lupus, and 16,000 new cases are diagnosed each year. In the U.S., 1 in 537 African American women have lupus. Many doctors believe the rate of lupus is underestimated, so there may be many more people with lupus out there.1

Myth #2: Men don’t get lupus.

While women are 10-15 times more likely to be diagnosed with lupus than men are, men do get lupus. Men with lupus tend to be diagnosed at later ages than women are and have more serious complications caused by kidney issues and inflammation of the linings around organs (serositis) compared with women with lupus. Men have higher rates of heart disease, stroke, and cancer. Women tend to have higher rates of infections and osteoporosis.2

Myth #3: Children don’t get lupus.

While lupus is quite rare in children, children as young as 5 have been diagnosed. Most children with lupus are diagnosed around age 12-13. Children with lupus tend to have a more serious form of the disease. Children with lupus account for about 10 percent of all lupus cases.2,3

Myth #4: Lupus runs in families.

Doctors do not know exactly what causes lupus. Some people have family members with lupus while others have no known family members with the disease. In fact, only 10 percent of people with lupus have a close relative who also has lupus. Most researchers believe that genes play a role in who develops lupus, but that certain environmental factors increase the risk or trigger the disease.4,5

Myth #5: You can catch lupus.

Studies conducted by the World Lupus Foundation across 16 countries have consistently found that many people still think you can “catch” lupus. Lupus is not a contagious disease, but an autoimmune disorder. Doctors believe that some combination of genetics, hormones, and the environment combine to cause lupus. You cannot get lupus from shaking hands, hugging, sitting next to, sharing food, or having unprotected sex with someone who has lupus.6-8

Myth #6: Lupus is a type of cancer.

While some people with lupus may be treated with chemotherapy, lupus is not a type of cancer. It is an autoimmune disease in which the body attacks its own healthy tissue. People with lupus may have an increased rate of certain cancers, but lupus is not cancer.2,9

Myth #7: Lupus is a type of HIV/AIDS.

Lupus is an autoimmune disorder caused by a combination of genes, hormones, and environmental factors. It is not a virus like HIV (human immune deficiency virus). In lupus, the immune system becomes overactive, attacking healthy tissue. In HIV, the immune system becomes underactive, failing to protect the body from infections.9

Myth #8: Everyone with lupus gets a butterfly-shaped rash across their cheeks and nose.

While many people with a butterfly rash do have lupus, that is not the only cause of such a rash. Only about 50 percent of people living with lupus get a butterfly, or malar, rash.10

Myth #9: Women with lupus can’t have babies.

Women with lupus generally are as fertile as any other women, though lupus gives them an increased risk of miscarriage, preterm birth, and stillbirth. This is why women with lupus should be taken care of by a high-risk OB/GYN. Unlike women with other autoimmune diseases that tend to go into remission during pregnancy, women with lupus often experience more flares and preeclampsia.2

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Written by: Jessica Johns Pool | Last reviewed: January 2020