Introduction

Systemic lupus erythematosus, or lupus, is an autoimmune condition that affects body tissue like the skin, joints, and organs. Autoimmune conditions cause the immune system to get confused and attack its own body instead of fighting off illness and infections. 

Lupus is more common in girls and usually develops from age 15.

Lupus can be passed down in families and is more common in children who have families from:

  • Asian countries
  • African countries
  • Afro-Caribbean countries
  • Hispanic countries.

 Signs and symptoms

Lupus causes many different symptoms that can vary in each child. These can include:

  • pain and swelling of the hands, wrists, elbows and knees or other joints
  • rashes on the face and body
  • abdominal or belly pain
  • unexplained fevers
  • loss of appetite
  • unexplained weight loss
  • loss of energy and being unusually tired
  • headaches
  • photosensitivity – where the skin becomes sensitive or irritated when exposed to sunlight
  • changes in mood and behaviour.

Children with lupus may also have issues with:

  • blood pressure and blood clots
  • chest pain 
  • breathing 
  • kidney function.

Your child may have periods where symptoms get worse before calming down. This is called a flare-up.

Diagnosis

Your local doctor will refer your child to a specialist doctor called a rheumatologist for diagnosis and management of lupus. A rheumatologist looks after the joints and muscles. 

There is no single test for diagnosing lupus. Your child’s doctor can diagnose lupus by:

  • taking a detailed family medical history
  • physically checking your child’s skin and joints
  • checking the results of blood tests
  • checking the results of urine tests
  • checking the results of scans and x-rays of the organs and joints
  • doing a biopsy – where a sample of affected tissue is taken and tested.

Diagnosing lupus can take a long time because symptoms can vary between children and may look similar to other health conditions.

Your child’s doctor will let you know which tests are needed depending on symptoms. 

Treatment

Lupus is an ongoing condition that can be managed well with medications and other treatments that:

  • treat symptoms
  • prevent further damage to body tissue and organs.

Your child’s doctor will talk to you about different medications and treatments for lupus and which ones are most suitable.

Children with well-managed lupus may find their symptoms get better as they grow up.

Lupus can go into remission. Remission means the disease does not cause any symptoms for a period but may flare up from time to time.

Disclaimer

This factsheet is provided for general information only. It does not constitute health advice and should not be used to diagnose or treat any health condition.

Please consult with your doctor or other health professional to make sure this information is right for you and/or your child.

The Sydney Children’s Hospitals Network does not accept responsibility for inaccuracies or omissions, the interpretation of the information, or for success or appropriateness of any treatment described in the factsheet.


© Sydney Children’s Hospitals Network 2024