For Lupus Awareness Month, we asked new C+F Board Member, Dr. Deborah Levy, to share five facts about childhood-onset Systemic Lupus Erythematosus (cSLE). Dr. Levy is the Clinical Director, Division of Rheumatology at the Hospital for Sick Children (“SickKids”) in Toronto and an Associate Professor of Pediatrics at the University of Toronto. She is the co-director of the Lupus Clinic at SickKids and her research primarily focuses on the long-term medical and psychosocial outcomes of childhood-onset Lupus.

Get started by reading 5 Important Facts about Lupus below:

Fact #1

Lupus is a chronic autoimmune disease that does not have a cure. However, that doesn’t mean that the symptoms will always be present. Many treatments are available, which, in conjunction with a healthy active lifestyle and sun avoidance, can lead to short and long periods of disease remission. Although lupus can have periods of flare and remission, working together closely with your healthcare team to ensure close monitoring and appropriate medications can help to prevent flares.

Fact #2

New treatments for lupus in children are on the horizon! There are more new medications being studied right now than ever before, and lupus researchers and lupus healthcare providers are excited by these promising new treatments that will improve care for many patients (young and old) with lupus.

Fact #3

The sun is not our friend. Although the sun feels great, and makes (many of) us happy (especially after a long Canadian winter!), the ultraviolet rays of the sun are not friendly to those who have lupus. The sun’s rays cause certain cells to break down, and people with lupus may have difficulty getting rid of these “dead cells”, thereby leading to a lupus flare with rash and other lupus symptoms (such as problems with blood cells or kidney disease). So, to enjoy being outside, a high number SPF sunscreen should be applied (and frequently reapplied). We also encourage wearing hats, long-sleeved light clothing if possible, and avoiding prolonged direct sunlight between 11 am – 3 pm.

Fact #4

Kidney disease (“lupus nephritis”) occurs frequently in young people with lupus. Up to half of all children and adolescents who have lupus will develop lupus nephritis, and usually this happens within the first 3 years of developing lupus. Lupus nephritis is suspected by checking the urine and blood tests, and is confirmed by doing a kidney biopsy, which is when a small piece of the kidney is taken through a procedure using a special type of needle. The biopsy is examined under a microscope since lupus nephritis can have several different forms. The types of treatments that are needed to treat nephritis depend on what the biopsy looks like under the microscope.

Fact #5

Taking lupus medicines can be challenging. Being an adolescent without having to deal with having lupus is challenging enough, but then when the healthcare team tells you that you need to take another 3 or 5 or even more medicines it can be really hard. Medicines can have side effects, and sometimes make you feel worse before you feel better. Taking lots of medicines is inconvenient and gets in the way of being a “normal” teen. Adolescents in particular should discuss their concerns with their healthcare team in order to try to work towards the easiest way to take medications.

From these 5 facts shared by Dr. Levy, we hope that you learned something new about Systemic Lupus Erythematosus (cSLE). If you’re looking for more information about lupus and reading stories from youth in our community, visit Cassie and Friends Lupus Resource page or lupuscanada.org.

Spreading awareness and taking action in our own communities are two good ways that we can support and uplift children and youth with Lupus! #LupusAwarenessMonth