Systemic Lupus Erythematosus (Juvenile)

What is systemic lupus erythematosus (SLE)?

Systemic lupus erythematosus (also called lupus or SLE), is an autoimmune disease that causes inflammation of the skin, joints, and organs—most commonly the kidneys, heart, lungs and brain. In autoimmune diseases, the immune system mistakenly attacks healthy tissue and cells.

SLE occurs most often in women, and it usually develops at the age of 15 or older. It is more common in African Americans, Asians, and Hispanics than in Caucasians.

SLE can be difficult to diagnose and challenging to live with. People with lupus usually experience periods of symptoms followed by periods of remission (no symptoms). In young people, kidney damage one of the most serious potential effects of the disease.

What are the symptoms of SLE?

Many symptoms of SLE are similar to symptoms of other conditions, so it is important to be diagnosed by a pediatric rheumatologist. SLE symptoms include:

• Butterfly-shaped rash, usually found on the nose and cheeks
• Raised rash found on the head, arms, chest or back
• Sunlight sensitivity, which may cause rash
• Fever or fatigue
• Joint stiffness, pain, and swelling
• Mouth ulcers (sores)

A more severe form of this condition may cause:

• Kidney problems
• Very low platelet or red blood cell count
• Seizures or other nervous system issues

How is SLE diagnosed?

SLE is diagnosed in children and adolescents by a pediatric rheumatologist, who will conduct a full medical exam including blood and urine tests. Anti-nuclear antibody (ANA) levels are almost always elevated in people with SLE, although levels can be high for other reasons as well.

Your rheumatologist may also order imaging tests—X-ray or MRI—which will produce pictures of internal organs and tissues. When four symptoms or blood test abnormalities are present at the same time, it can lead to a diagnosis. 

How is SLE treated?

There is no cure for SLE but with proper diagnosis, treatment, and monitoring from a pediatric rheumatologist, the condition can be managed. Many young patients are able to lead active, productive lives. Specialists at our Pediatric Rheumatology Program will develop a treatment plan based on the severity of your symptoms.

Treating SLE will involve one or more medications, which may include corticosteroids, which help with inflammation, and hydroxychloroquine to help with symptoms.

SLE can cause kidney inflammation (nephritis), and treatment of SLE nephritis includes medications to decrease the risk of developing kidney damage.

It is important to become educated about the disease and to become an active participant in your care. For some children and teens, counseling can help them cope with having a rheumatic condition.