There are very few healthcare professionals in the country who could tell you why these windows are blacked out.
That’s because EPP is a rare disease. Erythropoietic protoporphyria is a genetic condition that makes exposure to sunlight cause extreme pain.
Pete described it to us like this:
“The feeling is agony. It’s the only way I can describe it. Agony. Any part of my skin that’s exposed, feels like it’s on fire. It’s incredibly painful. It’s so painful that if there was a slight touch against my hands, then it would feel like somebody was running a knife across my skin.”
We were filming a series of films about people living with the condition. We couldn’t film in Pete’s house, so we rented an Airbnb. Before the interview we had blacked out all the windows. Towards the end of the day the sun shifted direction and caught the bottom of the stairs. A shard of light maybe two feet wide cut across the bottom of the staircase. Pete jumped across it.
It’s known as shadow hopping. It’s the constant calculation of where the light falls and how to move through the day so it doesn’t harm him.
In Ireland we met an outgoing 18 year old called Tiernan and his family. He’s a lovely guy, full of life and ideas and a talented sports person.
Through the British Porphyria Association, he had connected with someone else in Ireland living with EPP. When he described that moment, it was hard not to feel the significance of what he shared with us:
“I suppose we share a lot of the same stories. It was really weird, like hearing someone else say something that I would say. And it’s just the strangest feeling, having someone else, really.”
People like Pete and Tiernan aren’t looking for information. They’re looking for recognition. The moment they hear something and think, finally, someone knows what this is actually like. That’s what builds trust in healthcare.
Healthcare communicators who build campaigns from the outside of patients’ lives often create content that’s accurate but emotionally hollow.
When you witness and document a life as it’s lived and tell that story from their perspective something irreversible happens. A doctor recognises something true about a patient they thought they already understood. A patient with the same condition thinks: “Yes, they get it”.
You don’t get that from a patient persona. You get it from showing up and witnessing a man jump across a strip of sunlight at the bottom of a staircase.
