Lupus is an autoimmune disease. In autoimmune diseases, the immune system turns against the body it's designed to protect for unknown reasons. Lupus can affect nearly every organ system in the body, including the skin, joints, kidneys, heart, lungs and central nervous system. Most often when people speak of childhood lupus, they are referring to systemic lupus erythematosus (SLE).
Lupus is a lot more common in young people than is generally believed. The best estimate is that SLE affects between 5,000 and 10,000 children in the United States. Adolescent girls develop lupus much more frequently than do boys, but in younger children before puberty, girls are affected only a little more frequently than are boys.
The causes of SLE are unknown but are believed to be linked to genetic, environmental and hormonal factors. Research suggests that genetics plays an important role, but it also shows that genes alone do not determine who gets lupus, and that other factors may contribute. Some of the factors scientists are studying in adults and children include sunlight, stress, hormones, cigarette smoke, certain drugs and infectious agents such as viruses.
Doctors and scientists do not yet understand all of the factors that cause inflammation and tissue damage in lupus.
SLE is often characterized by periods of illness and remission. There are many symptoms associated with lupus. Every organ system can be involved and each system can be involved in different ways. Lupus can affect joints, skin, brain, lungs, kidneys, and blood vessels. Children and teens with SLE may have fatigue, pain or swelling in joints, skin rashes, fevers, hair loss, mouth sores or skin color changes due to the cold (Raynaud's phenomenon). Fatigue is one of the most prominent and life-affecting symptoms. Joint pain, another prominent symptom, is what most commonly initiates the first doctor visit.
Because SLE affects so many different organ systems and because different symptoms are manifest at different times, the diagnosis of lupus can take a long time. When diagnosing lupus, it is important to rule out other diseases, such as juvenile idiopathic arthritis (JIA), that have similar features. Diagnosis will include a complete family and medical history, a physical examination, X-rays and laboratory tests. Laboratory tests can help diagnose lupus and decide which, if any, organs are involved. In addition, regular testing of blood and urine after lupus is diagnosed can help monitor the activity and severity of the disease, as well as how well the medications are working.
Lupus is a disease that can flare and then settle down again at any time. Often, monitoring tests can predict flares. In other words, the tests become abnormal before symptoms occur, and treatment started or increased at this stage may prevent further problems.
Treatment is available for everyone with lupus and it usually works well. The treatment is aimed at preventing complications, as well as managing the symptoms and signs of the disease. A well-rounded treatment plan may include medications, diet and exercise. The medications prescribed may include nonsteroidal anti-inflammatory drugs (NSAIDs), disease-modifying antirheumatic drugs (DMARDs), biologic response modifiers (biologics) and corticosteroids.
Self care involves understanding and following the treatment prescribed by doctors and other healthcare providers. It also involves making lifestyle choices and addressing both the physical and emotional effects of the disease. Self management encompasses the choices made each day to live well and stay healthy.