Like all autoimmune diseases, lupus causes the immune system—our natural protection against foreign invaders like viruses and bacteria—to mistakenly attack the body itself. What makes lupus unusual, and frequently distressing for patients and families, is its unpredictability: It can affect almost any part of the body, and often many parts at the same time. There are different types of lupus, but in general the word “lupus” is shorthand for the most dominant form, systemic lupus erythematosus. Also known as SLE, this illness
is a chronic (meaning lifelong) autoimmune disorder with no known cause or cure
most often affects adolescent girls and younger women (15 to 44)
can target various parts of the body, including the skin, joints, blood and vital organs like the kidneys, heart, lungs and brain
tends to alternate between being more active (when symptoms surge, or flare) and less active (when symptoms appear to go away) is less common in children, and when it occurs doctors tend to call it pediatric systemic lupus erythematosus (pSLE) because it typically hits kids harder than adults and carries extra health risks, since children have more years to accrue organ damage, as compared with adults
Back in the 1950s, children with lupus faced only about a 30 to 40 percent chance of survival. Today, however, there are powerful medications that can bring this illness under control—often permanently—in the majority of children and allow them to lead full, relatively normal lives.
How Children’s Hospital Boston approaches lupus
If your child has lupus, it can be a confusing and scary diagnosis to deal with. At Children’s Rheumatology Program, we will be with you every step of the way in fighting this disease and helping your child enter adulthood as healthy as possible. As a partner in this process, we offer:
- experience: Providing care for many patients with lupus, our pediatric rheumatologists are deeply aware of the impact this disease can have on childhood. They know not only what lupus looks like and how to treat it, but also how best to support kids—and parents—through the process.
- team strength:Because lupus can attack any organ, many kinds of specialists may be needed to treat it. At Children’s, our rheumatologists work hand-in-hand with other physicians throughout the hospital—especially nephrologists (kidneys) and neurologists (the nervous system)—who have dealt extensively with childhood lupus.
- innovation:At Children’s, we’re continuously pushing the boundaries of lupus treatment by participating in studies and clinical trials for new therapies. And among other research initiatives, we are working closely with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) on upcoming studies on treating and managing lupus in children.
About our Rheumatology Program
As one of the largest rheumatology programs in the United States, we see more than 3,000 children in our outpatient clinic and more than 600 children on an inpatient (hospitalized) basis each year. Our dedicated caregivers offer the latest therapeutic approaches to treat what can often be painful and debilitating conditions. Our specialized training in pediatrics means that we understand the unique challenges, circumstances and intricacies of working with young people who have unexplained fevers.
We specialize in innovative, family-centered care. From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs. Our team offers your family many psychosocial supports, including the services of a social worker, Child Life specialist and psychiatric nurse.
Lupus: Reviewed by Mary Beth Son, MD
© Children’s Hospital Boston; posted in 2011