Participate in the #RealPeopleRealPain Challenge

An example video with our Director of Community Engagement, Katri.

Make your #RealPeopleRealPain Video

Step 1: Pick Your Location

You can record your scream anywhere—your home, a park, an empty street, or even a busy place for maximum impact.
Step 2: Record Your Scream

You have two options:
✅ Scream for real: Let it out! Show how overwhelming porphyria pain can be.
✅ Use an existing scream sound: If you prefer not to scream, you can lip-sync or add a dramatic scream audio.
Here are some audios you can use:
Audio 1 Audio 2
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.”
Step 4: Post Your Video

Use the hashtag #RealPeopleRealPain to spread awareness.
Tag @UnitedPorphyrias and 3 friends to challenge them to participate.