FAQs
What is Lupus (SLE)?
Systemic lupus erythematosus (SLE or Lupus) is a disease in which the immune system is overactive and does not function properly. The immune system attacks the body and can create inflammation in the skin, joints, kidneys, lungs, nervous system, and other organs of the body. People with Lupus can have times of very active disease, called a flare, and times where the disease is mostly quiet, called a remission.
About 20 percent of people with Lupus develop the disease before the age of 20. It is rare to get Lupus before 5 years of age. Lupus is more common in women and girls and in certain ethnic groups, including African-American, Hispanic, South and Southeast Asian and North American First Nations populations.
How can someone with Lupus help themselves stay healthy?
Sun exposure can sometimes trigger a Lupus flare. Kids with Lupus should always wear sunscreen and sun protective clothing and avoid going out in the sun.
Getting a good night’s sleep, reducing stress, and getting regular, moderate exercise can also help kids with Lupus to thrive.
A healthy diet with plenty of fruit and vegetables can support kids with Lupus and other auto-immune disease. For more information, visit My Plate.
With proper treatment and a healthy lifestyle, kids with Lupus can live a full and happy life.
What are the symptoms of Lupus and how is it diagnosed?
There are many symptoms of Lupus and each case and each patient is unique. Some common symptoms are fatigue, fever, malar rash (butterfly shaped rash on face) that gets worse when exposed to sun, sensitivity to sun, achy body, swollen joints, hair loss, unexplained weight loss, mouth sores, nausea, lips, fingers and toes turning blue or white when exposed to cold or stressful situations, and brain fog. Lupus can affect all parts of the body with no pattern depending on what part the immune system targets. Some common targets are organs (liver, kidney, heart, etc.), brain, eyes, joints, skin, digestion, and overall energy levels.
To get a diagnosis, a doctor will do a full checkup, a urinalysis and blood work often including an ANA (anti-nuclear antibody) test.
As Lupus is rare in children, can mimic other diseases, and there are not many pediatric rheumatologists in the United States, it can take time for a kid with Lupus or auto-immune disease to get a proper diagnosis.
Is Lupus genetic?
While further research is needed, a team of leading rheumatologists published a study on the genes of children with early onset Lupus (Juvenile SLE). They tested 753 subjects and discovered a direct link between genetic differences in two genes and a susceptibility to early-onset Lupus. These two genes are the P-selectin gene (SELP) and the interleukin-1 receptor–associated kinase 1 gene (IRAK1). These findings could help us learn more about Lupus in kids.
One theory suggest that a person needs to have the genetic difference along with an environmental trigger to activate and get Lupus. Scientists are researching possible triggers like viruses and trauma. Some researchers believe having a family history of Lupus increases the likelihood of getting it.
How is Lupus treated?
Lupus is chronic which means a kid with Lupus will have it their whole life. There is no cure yet but we are hopeful that researchers will soon find a cure. There are, however, treatments to help kids get into remission, where the disease is not as active. Common medications to treat Lupus are over the counter anti-inflammatory drugs (like ibuprofen), antimalarial drugs (like Plaquenil), corticosteroids (like prednisone), immunosuppressants (like Imuran or CellCept), and biologics (like Benlysta). Always consult your rheumatologist to find the best treatment for you. With careful treatment, eighty to ninety percent of people with Lupus will live a normal lifespan.
There is a lot of research being done to find a cure and any many new treatments are being tested worldwide. Stem cells may be able to help people with autoimmune diseases and a new machine called the LFA-REAL may help monitor Lupus activity. Scientists are studying possible triggers that activate Lupus, as well.
Organizations such as the Lupus Foundation and Lupus LA are raising money to support this important research and to find a cure.
Why is it called Lupus?
There are several theories as to how Lupus got its name and they have to do with wolves as Lupus is the Latin word for wolf. The mylar face rash that often accompanies Lupus looks like a wolf’s bite or the markings on a wolf’s face. Erythema is a greek word meaning red, or like a blush. So put together, “lupus erythematosus” means red wolf. Lupus can be stealthy and hard to pin down, similar to the behaviors of a wolf.
Many Lupus kids can find strength from their connection to the wolf for which their disease is named and hope from the butterfly which represents the shape of the Lupus rash. We hope our logo for Lupus Kids, with the wolf and the butterfly together, is a hopeful and empowering image for kids with Lupus and auto-immune disease.