Back to School With Porphyria: How a 504 Plan or IEP Can Help
Porphyria Voices shares experiences, insights, and advice from the porphyria community. Discover valuable knowledge, foster connections, and join us in raising awareness to empower and unite our porphyria family.
By Molly Komon
Back to school can be a difficult time for everyone, but especially for porphyria patients and their parents. No matter what type of porphyria you have, school can be an environment where you may have trouble getting the help that you need and being safe while avoiding triggers or harmful exposure. It can also be hard to communicate your needs to teachers and school staff who are not educated on how your disease works and affects your day-to-day life.
For people living in the US, you may be eligible for accommodations. These accommodations can include things like preferential seating and support between classes. Accommodations that apply to a school setting are called a 504 Plan or an IEP.
A 504 Plan or an IEP are documents containing a list of accommodations that your school can provide to you to help with the struggles of certain physical disabilities and diseases at school. If you believe that this will help your child at school, you can contact the school and ask them about getting a 504 Plan or IEP for your child.
Some of the accommodations may include sitting further away from windows, managing emergency drills safely, extra time for assignments if they are required to miss school due to a medical issue, and other items that might be helpful to you.
I have a 504 Plan, and it has been extremely helpful. I get notified of fire drills ahead of time, I get to sit away from windows, I get extra time on tests and assignments if necessary due to medical issues, and I also got special protective goggles for one of my classes.
“Getting a 504 Plan or an IEP can remove a lot of the stress that may come along with going back to school with a rare disease. ”
If you have a formal diagnosis and proof of a disability, your school may provide you with disability accommodations. Parents and families can work with a coordinator at the school or the special education team.
Getting a 504 Plan or an IEP can remove a lot of the stress that may come along with going back to school with a rare disease. It can be challenging and scary, especially when dealing with new teachers. However, with a plan in place, you don't have to explain everything every time your child has issues with school.
Molly wearing protective gear.
Molly Komon is 12 years old, an Erythropoietic Protoporphyria (EPP) patient, and a UPA Junior Ambassador. They share their experiences to help other young people with porphyria and their families feel more supported and understood.
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