Navigating School Life with Lupus

By: Elizabeth SantaCruz


As a parent of a child diagnosed with Lupus, how do you prepare your child for school when they have a chronic illness? How do you teach your child to have a voice at such an early age? How do you protect them?

These are all thoughts that have traveled through my head since learning Miah, my daughter has Lupus. After my daughter’s diagnosis, I knew that I needed to learn as much as possible, especially since I had absolutely zero knowledge about Lupus. I spent so many days, afternoons and nights looking through different Lupus related websites. One morning I found something called a 504 Plan. This was where things got interesting! A 504 plan is an education plan that provides accommodations and modifications for a student with a medical condition and/or physical disability. The plan is designed for their academic success and delivers access to a learning environment which is then tailored to a child’s individual needs.

At first, I thought...we don’t need this! I mean, why would we? However, over time that mindset rapidly changed. In March, the students begin going outdoors for recess and gym. One evening, I got home and Miah’s face was inflamed with red patches all around her nose and cheeks. Frightened, I called her Rheumatologist and Dermatologist and they told us that Miah has photosensitivity; a skin reaction to natural and artificial light due to Lupus.

Suddenly it seemed I needed to create a 504 plan to make sure Miah's school addressed her new necessities.  I reviewed samples of 504 plans I found online. As parents, my husband and I were brand new to managing a chronic illness and I needed to make sure that we didn’t miss anything. I printed all of my daughter’s medical records, information, and literature explaining how photosensitivity affects Lupus patients.  Both the Dermatologist and Rheumatologist gave us an official letter with their 504 plan recommendations. The next step was to call the School and schedule a meeting with the 504 plan committee. I didn’t even know this was a “thing” that could be done!

The day finally arrived and I had all the paperwork (extra copies just in case), pictures, and notes.  The meeting started with me explaining what Lupus is, how it affects Miah individually and discussing her treatments along with the physicians she is currently seeing. This information is extremely important because it provides insight into the exact type of accommodations that would be needed. As we know, Lupus affects all individuals in a different way and the 504 plan needs to be tailored to each child’s individual needs.

The second part of the meeting was with the school nurses. It was important for them to be informed of the current medications Miah was taking as well as the symptoms and side effects she experiences.  A plan of action was developed based on our provided information. This is how a 504 plan should work. You gather all pertinent information to your child’s health needs, including any medical recommendations. Next, you present it to the School. Together, you then work to formulate the best possible plan for your child’s success in learning. It is important to know and learn that a 504 plan can be modified at any time to address any new developments in your child’s health. The plan should always be tailor-made to fit your child’s needs.

My daughter’s School has been extremely supportive of my daughter’s diagnosis.  Not only has the school addressed the condition, they’ve also provided education for all of their students on the effects of Lupus. They have really embraced Lupus Awareness among all staff and students. I am so grateful that my daughter Miah has their amazing support. Have you ever had to create a 504 plan for yourself or child? Let’s discuss below.

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