IT’S NOT ALWAYS POSITIVE, BUT IT’S CERTAINLY NOT ALWAYS NEGATIVE

Ana

“I’m probably doing it for all the 10-year-old Anas out there.”

Ana lives in a small village in Slovenia. She is an artist who expresses herself through painting and poetry, never allowing her rare condition to hold her back. Amid the routine of dressing changes, Ana finds focus and purpose in her creative work. Her atelier is a quiet space where she can step away from the demands of her condition and immerse herself in her inner world.
With openness and determination, Ana challenges stereotypes about disability, guided by her experience and a desire to be the kind of person she needed to see as a child—someone living with Epidermolysis Bullosa and leading a normal life.

DIRECTOR

Gianpaolo Bigoli

PHOTOGRAPHER

Marco Gualazzini

DISEASE

From the Director’s Perspective

Everything we wanted to know about Ana was there: in her paintings, in the light of the studio, in the elegance of her gestures, in a life embraced with such care.
The flower she had tattooed years ago held all the strength that any mark could hope to convey.
Then it didn’t make it into the final cut, just like the Slovenian music from the vinyl I had insisted on listening to.
Ana and her mother laughed about it — and they were right to.

Notes by

Gianpaolo Bigoli

Behind the Photographer’s Lens

We took off our shoes before entering. Perhaps not to keep the place clean, but to avoid making noise—like butterflies that fly in silence. But you dislike that image, so often linked to fragility. And you are anything but fragile.
I wanted to understand your way of being in the world, how much richer life becomes when lived with such intensity, the way you live your life.
I wanted to ask if you have a word that could heal me—because in front of you, I’m the fragile one.

Notes by

Marco Gualazzini