“Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead (What is Lupus, 2013).” Although experts are unaware of what causes an individual to be diagnosed with Lupus, it is speculated that hormones and environmental factors may play a role (What is Lupus, 2013). Additionally, there are dozens of known genetic variants that are linked to Lupus. These genes impact who is diagnosed with the chronic condition and the severity of the individual’s disease. The Lupus Foundation of America (2020) found that nearly 20 percent of people with Lupus will have a parent or sibling that is also diagnosed with the disease. This suggests that the correlation between Lupus and genetics may be more related than researchers believe. 

Depending on the child’s stage of development, here are some key words you can use when explaining Lupus to children:
• Immune System – the parts of your body that protect you from germs that could make you sick
• Infection – unhealthy germs that attack your body
• Organs – part of your body, like the heart, lungs, or brain, that help keep your body working
• Inflammation – red and swollen

There are 4 different forms of lupus:

  1. Systemic Lupus Erythematosus (SLE)
    • An autoimmune disorder characterized by inflammation that mainly affects multiple organ systems (Ji et al., 2012). 
    • Most of these cases affect major organ or tissue, such as the heart, kidneys, lungs, and brain (Lupus Foundation of America, 2020).
  2. Cutaneous Lupus
    • Affecting only the skin (Lupus Foundation of America, 2020).
  3. Drug-induced Lupus
    • Caused by high doses of medications (Lupus Foundation of America, 2020).
  4. Neonatal Lupus 
    • Neonatal Lupus is a rare case of lupus where the mother’s antibodies affect the fetus. The symptoms are similar to systemic lupus (Lupus Foundation of America, 2020).
    • At birth, babies may experience symptoms, such as a skin rash, liver problems, or low blood cell count, which will typically disappear after 6 months (Lupus Foundation of America, 2020).

According to Lupus Foundation of America (2020), common signs and symptoms of lupus may include:
• Extreme fatigue
• Pain or swelling in the joints
• Swelling in the hands, feet, or around the eyes
• Headaches
• Low fevers
• Chest pain when breathing deeply
• Sensitivity to sunlight or fluorescent light 

Lupus Facts from The Lupus Foundation of America
• 9 out of 10 people diagnosed with lupus are women.
• 1 in 3 people diagnosed with lupus suffer from multiple autoimmune diseases.
• Nearly 1.5 million Americans have a form of lupus.

Resources

  1. Websites
    • https://www.lupus.org/resources
    • https://lupusla.org
  2. Books
    • The Lupus Book: A Guide for Patients and Their Families, 3rd Edition by Daniel J. Wallace, MD
    • The Challenges of Lupus: Insights & Hope by Henrietta Aladjem
    • Coping With Lupus: A Practical Guide To Alleviating the Challenges of Systemic Lupus Erythematosus by Robert H. Phillips, PHD
    • In Search of the Sun: A Woman’s Courageous Victory Over Lupus by Henrietta Aladjem and Peter H. Schur, MD.
    • Learning About Lupus: A User Friendly Guide Edited by Mary E. Moore, PHD, MD, et al.
    • Living with Lupus by Mary Horowitz, MD, and Marietta Abrams Brill
    • Living with Lupus: The Complete Guide by Sheldon Paul Blau, MD, FACP, FACR and Dodi Schultz 
    • Lupus: Everything You Need to Know by Robert Lahita, MD, and Robert Phillips, PHD.
    • The Lupus Handbook for Women by Robin Dibner
    • Celebrate Life: New Attitudes for Living with Chronic Illness by Kathleen Lewis
  3. Applications
    • Flaredown
    • Medisafe
    • Stop, Breathe, & Think

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References 
Ji, L., Lili, S., Jing, W., Yanyan, H., Min, W., Juan, X., & Hongmei, S. (2012). Appearance concern and depression in adolescent girls with systemic lupus erythematosus. Clinical Rheumatology, 31(12), 1671–1675. https://doi.org/10.1007/s10067-012-2071-8
Lupus Foundation of America (2020). Understanding Lupus. https://www.lupus.org/understanding-lupus?utm_expid=.7AO1HbsrR9KO2Z8jF1HYTw.
What is lupus? (July 31, 2013). Retrieved from https://www.lupus.org/resources/what-is-lupus