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Life with epidermolysis bullosa: “Pain is my reality, pain is my normal”

"Pain is my life. It's my reality. It's my normal." These are the words that haunted me for days after first watching this film about Paul Martinez, a 32-year-old Stanford patient with epidermolysis bullosa (EB). I'm used to being moved by films made by my colleague Mark Hanlon, but his latest effort, called "The Butterfly Effect," is about as powerful (and tear-inducing) as anything I've seen during my time here.

EB, as Krista Conger described earlier this week, is "incurable, fatal, and nearly indescribably painful." Dermatologist Paul Khavari, MD, PhD, says in the film that "it just breaks your heart" when talking to patients and their families about what they go through, and Martinez, who shared his daily life and opened his home to Hanlon, puts it this way:

The word 'pain' itself doesn't even describe how bad EB is. Your body is constantly on fire - it burns from the wounds from raw flesh, and it keeps repeating over and over and over. The cycle is never ending.

Seeing what Martinez and his caretaker-mother endure every day (warning: it's not easy to watch) makes you wonder, frankly, how they do it - and also illustrates just how desperately a cure for this terrible disease is needed. Luckily, as detailed both in the film and Conger's accompanying Stanford Medicine magazine article, researchers here are working to combat the illness - and have been doing so for decades. And Khavari closes out the film with a hopeful tone, saying: "We can start to see on the horizon the potential to really make a difference for patients."

Previously: The worst disease you've never heard of: Stanford researchers and patients battle EB and This summer’s Stanford Medicine magazine shows some skin

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