Jan 27, 2022 4 min read

Q. My mom was just diagnosed with lupus. It’s just us. My dad left when I was a baby and I don’t know him. My grandparents live across the country. Mom isn’t exactly hiding things from me. She did tell me. But, she’s acting like it’s no big deal. So I looked online and it seems like it is a big deal. It’s the kind called “SLE.” I remember you telling us in class to be cautious when we read things on the internet and to ask an adult we trust for help. I trust you. How serious is this? I’m also worried about COVID-19. We are both vaccinated and I am very careful to mask at school.

14-year-old

Mary Jo’s Response: I’m proud of you for two reasons: Your concern for your mom is wonderful and you are wise enough to seek clarification of what you saw online. Your mom is lucky to have you.

Lupus is chronic – meaning it lasts long-term. It is an autoimmune disease – meaning it affects the immune system in the body. The challenge with lupus is the immune system usually fights infection, but with this disease, the immune system attacks healthy tissue instead.

There are four types of lupus.

The most common type is systemic lupus erythematosus or SLE. When the immune system attacks healthy tissue, inflammation, swelling and pain may result. Lupus affects many parts of the body – the word systemic refers to the whole body system.

Although I think your mom is trying to minimize her concerns to ease your mind, she is right about one thing – people dealing with lupus can have periods of time when their symptoms are mild. There can also be phases when symptoms worsen. Advances in lupus treatments make it possible for most people with SLE to live a normal life. The Lupus Foundation of America estimates at least 1.5 million Americans live with diagnosed lupus. The number may be much higher, since many cases are undiagnosed.

The symptoms of lupus vary widely, which is one of the reasons diagnosis can be difficult. Some possible symptoms of lupus are:

• Severe fatigue
• Joint pain
• Joint swelling
• Headaches
• A rash on the cheeks and nose, which is called a “butterfly rash”
• Hair loss
• Anemia
• Blood-clotting problems
• Fingers turning white or blue and tingling when cold, which is known as Raynaud’s phenomenon.

Your mom’s doctor will place her on a treatment plan that probably will include anti-inflammatory medications for joint pain and stiffness, corticosteroids to lower the immune response and antimalarial drugs for skin and joint problems. She may be told to eat or avoid certain foods and to try to lower stress. It’s important they she have preventative care to monitor her heart and kidney function.

The American College of Rheumatology recommends people with autoimmune disease get the COVID-19 vaccine unless they have an allergy to an ingredient in the vaccine, so I’m glad you’re both vaccinated. Your mom should check with her doctor to find out how risky the virus is for her. Masking is one way to show her your concern.

The Lupus Foundation of American offers information and support at www.lupus.org/resources/find-support-near-you.

Tell your mom you will be there for her during treatment and share your feelings. I know your presence eases her stress and brings her joy. May all go well for you and your mom.

Have a question? Send it to Dr. Mary Jo Podgurski’s email podmj@healthyteens.com.