May is Lupus Awareness Month and we reached out to Dr. Lori Tucker of BC Children’s Hospital to learn more about this rare autoimmune disease. Thank you, Lori for providing us with this important information.

By: Dr. Lori Tucker

Systemic lupus erythematosus (also known as ‘lupus’ or SLE) is a rare autoimmune disease.  It occurs in about 1 out of 2,500 people, and 10-20% of people with lupus have disease that started in childhood.  

SLE rarely occurs in children under age 5 years, and more commonly starts during pre-teen or teen years, affecting girls more often than boys.  It is also more commonly seen in people of Hispanic/Latino, Asian, African or First Nations background.   We don’t know what causes lupus;  there is likely some genetic contribution and there can be families in which there are several members with the disease.

Lupus is very variable from one person to the next; in some cases, it can start gradually and in others, a child may be very sick.  The disease can affect any organ, most commonly the skin, joints, kidneys and brain.  There are blood and urine test abnormalities that are helpful in making the right diagnosis and following the course of the disease over time. 

Lupus is a chronic disease, meaning that a patient will have this disease for many years.  Early diagnosis and treatment is important to control the inflammation and prevent long term organ damage, and then continued careful monitoring to find any sign of disease flare and treat before it becomes more serious.  There are effective treatments to control lupus, requiring a patient to take a combination of medications, often some given by intravenous infusions, to gain disease control.  In early stages of treatment, the medications will cause suppression of the immune system, and children require careful monitoring by parents and their rheumatology team. 

The outcomes for children and teens with lupus are very good, with early aggressive treatment and careful on-going care.  Many children will have well controlled disease for years, and are able to participate fully in school, sport, community and home activities.  However, there are some children who, despite careful management, do develop renal failure and require a kidney transplant, or develop other severe complications of lung or neurologic disease.   

Here are a few resources if you want to read more about childhood lupus:

https://www.aboutkidshealth.ca/Article?contentid=920&language=English

https://www.printo.it/pediatric-rheumatology/GB/info/3/Systemic-Lupus-Erythematosus