08/31/2026
Back to school with a cutaneous porphyria means packing a little differently!
For children living with EPP/XLP, CEP, HEP, PCT, VP or HCP, preparing for the school day can include a few extra essentials to help reduce light exposure and stay prepared:
👕 UPF/protective clothing — Long sleeves and pants that provide appropriate light protection.
👒 Wide-brimmed hat — To help protect the face, ears, and neck.
🕶️ Protective sunglasses — For additional eye and face-area protection outdoors.
🧤 Gloves or hand protection — Because hands can be especially exposed during outdoor activities.
☂️ Umbrella — Portable shade for walking between buildings, waiting outside, or unexpected outdoor time.
💧 Water bottle — Staying hydrated throughout the school day is always important.
🎒 A personal “just-in-case” kit — Any additional items the child and their family rely on when managing a cutaneous porphyria.
🏫 A plan with teachers and school staff — Just as important as anything in the backpack! Make sure the school understands cutaneous porphyrias, the child’s specific needs, and what to do if symptoms occur.
Every child with porphyria is different, so families should work with their healthcare team and school to determine the accommodations and protective measures that are right for them 💜
Porphyria parents: what would you add to the backpack? Share your school-day essentials and tips in the comments to help other families prepare!💫
