You may have heard that lupus is a condition that commonly affects women. While that’s true — 9 out of 10 adults with lupus are women, and women are most likely to get it during their early reproductive years — lupus can also be diagnosed in men and children, according to research. (1) Lupus is an autoimmune disease, which means that in someone who has the condition, the body’s immune system, which normally attacks foreign invaders like viruses and bacteria, turns against its own cells and tissues. (2) There are several types of lupus, including cutaneous lupus erythematosus, a form of lupus that primarily affects the skin. But the most common one is systemic lupus erythematosus, or SLE, which involves inflammation in — and damage to — major organ systems; this is the form of lupus that is usually being referred to when people talk about lupus, according to the Lupus Foundation of America. (3) Lupus is the same disease in children and adults, but because it’s a lifelong condition, pediatric lupus patients face particular challenges. For instance, long-term effects of some medication, such as steroids, can be an issue. “Because lupus is a long-term disease, starting treatment in childhood means more exposure to steroids and immunosuppressants over a longer period of time,” says Jon Burnham, MD, clinical director of the division of rheumatology and codirector of the Lupus Integrated Nephritis Clinic at Children’s Hospital of Philadelphia. And because lupus progression can vary from one individual to another, it can make it hard to predict how a child with lupus will do over time. (4) “Some have very severe inflammation in the beginning that improves, while others start with low levels of disease activity that then get worse,” explains Dr. Burnham.
How Many Children Are Affected by Lupus?
Lupus is not a common condition in kids. Systemic lupus has been diagnosed in 5,000 to 10,000 children and teenagers in the United States. (5) In comparison, an estimated 1.5 million Americans overall have lupus, according to the Lupus Foundation of America. (6) “It’s a rare disease in children, and it’s extremely uncommon in children under 8,” says Meredith Atkinson, MD, associate professor of pediatrics at Johns Hopkins University School of Medicine, in Baltimore. And as with adults, there is a clear gender difference: Lupus affects girls more often than boys by as much as 9 to 1. (5) Age plays a role, too. Lupus is increasingly prevalent after the first decade of life. The majority of people who have lupus are young women between their late teens and 45 years of age, and in children, lupus is most common in those 15 or older. Doctors believe this may have something to do with the fact that the female hormone estrogen seems to be associated with lupus, according to the Children’s Hospital of Philadelphia. (7) “We see systemic lupus in girls at the age of puberty where the disease is similar to adult lupus, but we also have patients as young as 4 to 6 years old. Just as in adult lupus, pediatric lupus is more common in African Americans,” says Emma Jane MacDermott, MD, a consultant pediatric rheumatologist and associate clinical professor at University College Dublin at Our Lady’s Children’s Hospital, in Crumlin, Ireland. Children and adults of Asian and Latin descent are also at increased risk for lupus. (6)
Diagnosing Systemic Lupus in Children
Lupus can be tricky to diagnose because symptoms can resemble those of many other conditions, and can vary from person to person. (4) Kids with lupus are often not diagnosed right away, which means their condition may not be identified for months, even years. If a child goes for long time without being diagnosed, there is a greater chance of an organ disease, which may make it more likely that a child will need aggressive treatment. Children may only have one or two symptoms and then go on to develop more over time. “The criteria for diagnosing lupus in children are similar to those for a lupus diagnosis in adults. Since lupus is rare in children and can act like so many different diseases, there can be a delay in getting the right diagnosis,” notes Dr. MacDermott. According to the American College of Rheumatology, children with lupus may have one or more of the following symptoms: (8)
FeversUnexplained weight lossFatigueArthritis or joint painMouth sores or sores in the noseRash, especially on the cheeks
A general practitioner is likely to refer a patient to a specialist who is trained to diagnose lupus, such as a pediatric rheumatologist. Doctors may then run tests to look for other signs of lupus, such as the presence of specific antibodies that are typically in the blood of almost all people with lupus; swelling of the tissue lining the lungs or the heart; anemia; and abnormal urine tests indicating kidney problems. (8) As many as 2 in 3 children or teens with lupus develop kidney disease, says the Lupus Foundation of America (9). “A pediatric rheumatologist may look at a combination of patient history, lab data, and a physical exam to diagnose lupus in children,” says Burnham.
Lupus Treatment for Children: Knowing Your Options
There is no cure for lupus, but the good news is that the right treatment can help control symptoms, prevent inflammation, and protect organs from becoming damaged, notes the American College of Rheumatology. (10) Depending on the severity of symptoms, doctors may treat your child with medication and lifestyle remedies. If your child’s symptoms are not severe, your doctor may recommend a nonimmunosuppressant (medication that does not suppress the immune system). Options include the following:
NSAIDs (nonsteroidal inflammatory drugs), such as ibuprofen (Advil, Motrin) or naproxen (Aleve), are used to reduce joint pain. (7,8)Antimalarial medication, such as hydroxychloroquine, has been shown to be effective in lowering disease activity and reducing the risk of tissue damage and development of severe kidney disease. (11) Research has also shown that lupus patients who were treated with hydroxychloroquine were shown to be less likely to develop severe kidney disease. “Virtually every lupus patient goes on antimalarials,” says Burnham.
For more serious cases of lupus, doctors may turn to immunosuppressants to suppress the body’s immune system activity. These include the following: (12)
Corticosteroids work fast and are effective but can have negative side effects, such as weight gain, reduced bone density, and elevated blood pressure.Disease-modifying anti-rheumatic drugs (DMARDs), such as mycophenolate mofetil (CellCept) and azathioprine (Imuran), take longer to work than steroids and can have side effects such as liver problems and anemia.Biologics are drugs that are made from living cells that work by targeting certain parts of the immune system rather than suppressing it entirely.Cytotoxins work by destroying rapidly dividing cells in the overly active immune system of someone with lupus. These drugs are powerful and are used only for patients with serious kidney disease or central nervous problems, and can lead to side effects such as bladder problems, nausea, vomiting, and hair loss.
Your doctor may also recommend:
Physical and occupational therapy to increase mobility and strengthen musclesEating a healthy diet (that is heavy on bone-strengthening vitamin D and calcium, since corticosteroids can weaken bones)Keeping physically active by running around outside and playing, swimming, riding a bike, and more to keep muscles strong and joints flexibleNot spending too much time in the sun, since that may trigger a flare (a period of time when symptoms get worse and a child feels more tired and achy than usual)Getting plenty of sleep at night and taking naps, since people who have lupus can often feel tired and run down
Growing Up With Lupus: What It Means for Kids
Children who are diagnosed with lupus have to deal with a lot. There’s the practical management of the disease, like having to take medication and experiencing possible side effects, such as excessive weight gain and bone density loss from steroids. There are also the regular doctor’s appointments, which can have an adverse affect on school and family functioning, according to a study published in Pediatric Rheumatology in September 2014. (13) And because many kids who have lupus experience delays in diagnosis, they are more likely to have experienced damage to the kidneys, lungs, or other organs, which may then require aggressive treatment. (4) Because lupus, like other chronic diseases, can be mentally and emotionally tough to live with, finding a good therapist or a counselor for your child to talk to can be an important part of managing the illness. (10,12) Research has shown that children with lupus are at a higher risk for depression and anxiety than healthy children, says Dr. Atkinson. And since studies have also shown that pediatric chronic diseases can have a negative effect on disease control, quality of life, and school performance, a good therapist can be an invaluable ally for children who are managing lupus. (13) “Having to deal with a difficult chronic disease like lupus is so emotionally and socially difficult for children. These children have to deal with the symptoms of lupus plus the side effects of medication while they are trying to fit in at school and keep up with their friends. They often have to see many different types of doctors and this requires a huge time commitment. Plus, somebody has to take the time to get them to all these appointments. Psychological and family issues are inevitable,” notes MacDermott. “One of the biggest challenges in treating pediatric lupus is trying to help the child live as normal a life as possible.” In addition to a good mental healthcare provider and a pediatric rheumatologist, your child may also need other experts on their healthcare team, such as a pediatric nephrologist (if they develop kidney problems), nurses, a nutritionist, and a physical therapist. “Lupus is often multidisciplinary and knowing who the rheumatologist is, who the nephrologist is, and who’s in charge is important,” says Burnham. “Communication with your child’s healthcare team is critical.” Bottom line: You may not be able to predict how your child’s lupus will progress. However, you can empower your child by helping them understand their condition and what they can do to manage it. Encourage your child to participate in normal activities as much as possible by going to school, hanging out with friends, playing sports, and doing activities with family. By feeling like they have power over the disease, they can feel like they control lupus, not the other way around.
