How to explain your child's lupus to others

Lupus Foundation of America

Resource Content

Your child’s teachers, leaders of organized activities, friends, and friends’ parents need to be aware of how lupus affects your child. Many of the strategies mentioned in the article “Tips for teaching children and teens about their lupus” work well when speaking to your children’s friends about lupus. It is your role to advocate on behalf of your child so your child can be safe, healthy, and treated fairly.

  • Lupus is a chronic (lifelong) autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually any organ in the body
  • It is an autoimmune disease, this means the immune system mistakes some part of the body as an invader and attacks its own cells
  • This attack can potentially damage any part of the body (skin, joints, and/or organs inside the body such as kidneys, lungs or heart). Although many different parts of the body can be affected, sometimes only one or two organs or organ systems will be involved. Kidney disease in particular, is often seen in children
  • Lupus is the same disease in children as it is in adults. However, lupus is a disease of many symptoms that appear and disappear. Especially in children, it is important to remember that more problems may develop over time
  • In some children the symptoms of illness—and the side effects of medication used to treat the symptoms—will be obvious, such as swollen joints, weight gain, skin rash, or hair loss
  • Other children will look fine, but have invisible problems caused by the disease, such as protein in their urine from kidney damage, or shortness of breath from lung involvement

Q/A: Issues to explain to those who spend time with your child

Having lupus can lead to frequent absences from school and extracurricular events, due to health complications and treatment needs. Teachers and others who supervise your child’s activities need to be aware that your child’s absences could interfere with schoolwork deadlines and other responsibilities.
Lupus and the medications, used to control the disease—especially corticosteroids—can cause a bloated look in the face and neck, weight gain, easy bruising, delayed growth in height, and acne. Discoid lupus can cause skin lesions (sores) and rashes. These physical changes can be very difficult for your child’s self-esteem—especially during adolescence. School administrators and other adults close to your child need to be aware of these side effects in order to monitor how other children behave toward your child. No bullying should ever be tolerated or overlooked in a school or extracurricular setting.
Both lupus and the medications used for treating the disease—especially corticosteroids—can cause agitation, changes in mood, and other symptoms. Just as the disease can cause extreme fatigue, the medications can cause hyperactivity. Explaining these effects to teachers will help them understand if your child dozes off in class, or has trouble sitting still, or is behaving differently. This is not an excuse for bad behavior, however!
Lupus can cause extreme fatigue which can affect all daily activities. Explain that your child may need to take a break or sit out strenuous activities depending on how they are feeling. Children usually dislike having to miss out on fun group activities, Therefore a teacher or coach may need to make the decision to have your child rest if they appear especially fatigued during physical exertion.
Lupus can be unpredictable, and certain triggers can cause the disease to become active. This is called a disease flare. You can explain that being able to reschedule homework and test-taking, and have a set of books at home, or sharing notes from another student, could help your child keep up on their assignments.
The medications used to treat lupus often work to suppress the overactive immune system. In addition, some people with lupus do not respond to vaccinations as well as normal people. Children with lupus, therefore, are at increased risk of being infected by germs, viruses, and bacteria. It is very important that the school nurse and other adults who spend time with your child are aware of this increased risk. Your child should be encouraged to wash their hands frequently and to avoid close contact with children or adults who are sick.
There may be times when people ask you (or your child) questions such as why such a healthy-looking young person walks with a cane or does not participate in a school activity or needs a home tutor. Lupus is sometimes referred to as “an invisible disease” because often the person looks quite normal. Be patient as you explain these effects of the disease, and try not to take offense at other people’s reactions and attitudes.
Lupus - and the medications used to treat the disease—causes changes in the brain that can affect concentration or memory. This can make usual tasks and learning exercises difficult or nearly impossible. You can explain that this may hinder abilities to keep up in class or follow detailed instructions.
Too much sun exposure can trigger a flare of lupus. It may not be necessary to prevent your child from participating in outdoor sports and recess, however. Talk to school administrators and coaches about your child’s need for sun protective clothing (including a hat), breaks taken in the shade, and the need for sunscreen—especially if your shild sits in a sunny place in class. And explain to other parents that your child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool.