Assistance available to help a family member cope with the diagnosis of lupus | Columns

Q. My mother has just been diagnosed with lupus. It’s just us. My father left when I was a baby and I don’t know him. My grandparents live across the country. Mom doesn’t exactly hide things from me. She said. But, she acts like it’s no big deal. So I looked online and it seems to be a big problem. This is the kind called “SLE”. I remember you telling us in class to be careful when we read things on the Internet and to ask an adult we trust for help. I trust you. How serious is it? I am also worried about COVID-19. We are both vaccinated and I am very careful about wearing the mask at school.

Mary Jo’s response: I’m proud of you for two reasons: your concern for your mother is wonderful, and you’re wise enough to seek clarification about what you’ve seen online. Your mom is lucky to have you.

Lupus is chronic, which means it lasts for a long time. It is an autoimmune disease, that is, it affects the body’s immune system. The challenge with lupus is that 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 can result. Lupus affects many parts of the body – the word systemic refers to the entire body system.

Although I think your mom is trying to play down her concerns to reassure you, she’s right about one thing: People with lupus can have periods when their symptoms are mild. There may also be phases where the symptoms worsen. Advances in lupus treatments allow most people with SLE to lead normal lives. The Lupus Foundation of America estimates that at least 1.5 million Americans live with diagnosed lupus. The number can be much higher, as many cases go undiagnosed.

Symptoms of lupus vary widely, which is one reason diagnosis can be difficult. Some possible symptoms of lupus are:

  • Severe fatigue
  • Articular pain
  • Joint swelling
  • Headache
  • A rash on the cheeks and nose, called a “butterfly rash”
  • Hair loss
  • Anemia
  • Blood clotting problems
  • The fingers turn white or blue and tingle when cold, which is known as Raynaud’s phenomenon.

Your mom’s doctor will put her on a treatment plan that will likely include anti-inflammatory drugs for joint pain and stiffness, corticosteroids to reduce the immune response, and antimalarial drugs for skin and joint problems. They can be told to eat or avoid certain foods and to try to reduce their stress. It is important that she receives preventive care to monitor her heart and kidney function.

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

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