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A “Wolf” in Kid’s Clothing: Childhood Lupus

Lupus is a Latin word that means "wolf," which is thought to derive from the characteristic cheek rash that occurs in many individuals, with lupus appearing eerily similar to a wolf bite. It can also be associated with the disease being akin to the behavior of a cunning predator, endlessly and aggressively attacking its victims, students in the case of childhood lupus. According to the AAP, "childhood-onset lupus (meaning the disease develops before age 18) accounts for up to one-fifth of lupus cases." It's estimated that between 5,000 to 10,000 children in the United States suffer from the chronic disease. When in the school setting, students with lupus may require focused care and support from school health staff. 


There are various types of lupus, but systemic lupus erythematosus, or SLE, is the most common and prominent. Like other autoimmune disorders, lupus leads to the immune system, which usually safeguards the body against foreign substances such as bacteria and viruses, mistakenly launching an attack against the body's own healthy tissues and organs. However, what sets SLE apart and poses significant distress for students and their families is its erratic nature: it can impact virtually any body part, often affecting multiple areas simultaneously. 


The exact cause of childhood lupus is unknown, but it's widely believed to be a combination of genetic, environmental, and hormonal factors. Some studies suggest that lupus can run in families, and specific genes may make a person more susceptible to the disease. Environmental factors, such as exposure to sunlight, infections, and medications, can also trigger lupus in some people. While lupus can occur in both males and females, it is significantly more prevalent in females. However, in cases of childhood-onset lupus, the percentage of males affected is greater than in adult-onset lupus. 


Symptoms of the complex autoimmune disorder lupus can be so unpredictable, intermittent, and similar to other illnesses that it's often referred to as "the great imitator." Some common symptoms include joint pain and swelling, fatigue, fever, mouth sores, hair loss, chest pain, and photosensitivity. A hallmark symptom of lupus is a butterfly-shaped rash appearing across the cheeks, also known as a malar rash. 


While there is no cure for childhood lupus, treatment aims to manage symptoms and prevent damage to organs. Treatment may involve a combination of medications, lifestyle changes, and regular follow-up with a healthcare provider. Nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, immunosuppressive drugs, and antimalarial drugs are all used in various treatment protocols. In addition to medications, lifestyle changes can also help manage symptoms of childhood lupus. This may include regular exercise, eating a healthy diet, and avoiding triggers such as sunlight and stress.

Regular follow-up with a healthcare provider is also necessary to monitor symptoms and adjust treatment. Some students with lupus may require more frequent check-ups or additional monitoring of specific organs by various medical specialists. 

School Support

Students with lupus are highly recommended to have a formal plan like a 504 or IEP in place with their schools. A plan that describes the specific assistance or accommodations the individual requires will ensure the school provides the necessary support to help them succeed. School support will vary based on each student's needs, but some standard lupus-related accommodations may include:

  • Flexibility with absences, missed work, and due dates
  • Adjustments for tests
  • Bathroom privileges and access to the school health office
  • Breaks throughout the school day, as needed
  • Modified PE
  • Special nutritional support
  • Covers or screens on indoor UV lights
  • Elevator access


Finally, the AAP recommends that immunosuppressed students not receive live or active vaccines and advises parents of students with lupus to discuss immunizations with their pediatrician.

Childhood lupus is a challenging disease that can significantly impact an individual's health and quality of life. But with proper treatment, regular management of symptoms, and the appropriate care and support, these students can thrive in the school setting and beyond.

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