Starting a new school year is exciting. But for kids and young adults living with lupus, it can also be challenging. The wide range of symptoms caused by the disease can impact how a child learns, socializes and participates at school. CDC Ambassador Deborah Kofoed, a youth facilitator for the Lupus Foundation of America (LFA), shares tips to help kids and young adults with lupus thrive in the classroom.
Explain Lupus to Teachers and Staff
Lupus is a chronic autoimmune disease that can cause a wide range of symptoms, including joint pain, rash, fevers and, most commonly, fatigue. Symptoms can vary from day to day, so it’s important to help teachers and staff understand how lupus may affect your child’s needs. When you meet with teachers and staff:
- Describe what lupus is in simple terms.
- Explain your child’s specific symptoms and how they may appear in the classroom.
- Clarify any “red flag” situations (your child develops a rash or fever and needs to go directly to the nurse).
Clearly Define Your Child’s Needs
A student with lupus may have both health needs (such as medication schedules or avoiding sun exposure) and educational needs (such as flexible deadlines or rest breaks). Fatigue is the number one challenge for many kids with lupus, so accommodations like recording lessons or providing extra time for assignments can make a big difference.
Develop a Partnership
Open communication between you and your child’s school care team is key. This team may include:
- Parents/Guardians advocating for the child’s needs
- Teachers implementing accommodations in class
- School Nurse managing health plans and emergencies
- Counselor offering emotional and academic support
- Principal/Administrator ensuring plans are followed
- Doctor or Pediatrician providing medical documentation and guidance
LFA offers a template letter to inform the school about your child’s lupus and a health checklist outlining symptoms, medications, and steps for meeting your child’s needs.
Create a Plan for Your Child
A well-defined plan ensures that everyone knows what to do if symptoms flare. Formal plans like a 504 Plan or an Individualized Education Plan (IEP) provide classroom accommodations under disability law and/or specialized instruction for students who qualify. Individualized Health Care Plan and Emergency Care Plans are written by the school nurse to manage daily health needs (such as medications) and detail the steps the school should take when responding to lupus-related medical emergencies.
Teach Your Child to Advocate for Themselves
As kids grow, they can learn to take an active role in managing lupus at school. This includes washing their hands frequently and avoiding classmates who are sick. The LFA’s School Survival Guide for Kids with Lupus and School Survival Guide for Teens with Lupus offers tips to help navigate daily school life.
Prepare for College with Lupus
Young adults heading to college face new challenges (and new freedoms). There are several important action items college-age students should take as they prepare to move away from home. These include:
- Understanding health insurance coverage, especially if studying out of state
- Finding a doctor and pharmacy near campus
- Completing authorization forms so medical information can be shared with parents
- Registering with the campus Student Accessibility Office for accommodations.
- Knowing where to go for emotional support
Find more tips in LFA’s Top 10 Action Items for College-Bound Teens with Lupus.
Starting school with lupus may require extra planning, but with the right support system and communication, students can thrive. These tips can help your child build the confidence and resilience they need for every stage of their education.