Real People, Real Pain
Porphyria pain is real and impacts all parts of life
Though different types of porphyria vary widely in their symptoms and presentation,
one thing is constant: pain.
For Global Porphyria Day 2025, United Porphyrias Association shone a light on the painful realities of porphyria with the #RealPeopleRealPain Challenge. The porphyria community was invited to share their experience of pain through evocative illustrations and videos expressing the pain in the #RealPeopleRealPain Challenge and the UPA also shared research and facts about porphyria pain.
Real People, Real Pain Materials
Video: Patients Describe their Pain
Video: About Acute Porphyria Pain
Video: About Cutaneous Porphyria Pain
Video: Global Porphyria Day Recap
Participate in the #RealPeopleRealPain Challenge
This Global Porphyria Day, United Porphyrias Association is raising awareness of the painful realities of living with porphyria.
Scroll down to learn how you help spread awareness!
An example video with our Director of Community Engagement, Katri.
Make your #RealPeopleRealPain Video
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Step 1: Pick Your Location
You can record your video anywhere—your home, a park, an empty street, or even a busy place for maximum impact.
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Step 2: Express the Pain
The goal is to express the pain and frustration of living with porphyria in a raw and emotional way. Choose any action or gesture that helps you visually communicate what it feels like.
For example:
✅Covering your mouth while trying to scream, showing the silence many patients are forced to endure.
✅ Grabbing or twisting a piece of clothing to express rage or internal pain.
✅ Clutching your stomach or head to show where the pain hits.
✅ Screaming silently, with or without audio. Here are some audios you can use: Audio 1 or Audio 2
✅ Even sitting in stillness, if it captures the weight of what you feel.
Use your creativity—your body, your expression, and your energy can speak louder than words.
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Step 3: Add a Powerful Text
Use a POV caption to describe the reality of porphyria, such as: “This is what porphyria pain feels like.”
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Step 4: Post Your Video
Use the hashtag #RealPeopleRealPain to spread awareness.
Tag @UnitedPorphyrias and 3 friends to challenge them to participate.
Video not your thing?
Share illustrations and porphyria pain facts that resonate with you!
Scroll down to check out our gallery for inspiration, sample captions and to download images!
Don’t forget to tag @UnitedPorphyrias and use the hashtag #RealPeopleRealPain.
Write a caption that captures your experience (here’s some suggestions)
and use the hashtag #RealPeopleRealPain, tag @UnitedPorphyrias and tag 3 friends to invite them to participate.