Artem

“I live the life that not every healthy person can afford. Stop feeling sorry for yourself. Live your best life today.”

Meet Artem. An IT product manager, splitting his time between Moscow and Tashkent, Artem is passionate about cars, motorsports, billiards, and discovering new places. He is also living with Epidermolysis Bullosa (EB), a rare disease that has been part of his life from day one. While it comes with bandages and certain limitations, it has never defined his ambitions, relationships, or mindset. Whether meeting people professionally or personally, he has always preferred to be known for his character, sense of humor, and the person he is beyond his diagnosis. Together with his wife, Artem made the bold decision to move from Russia and start a new chapter in Uzbekistan, embracing uncertainty in pursuit of new opportunities. Today his days are filled with meaningful work, travel, and the adventures he and his wife continue to take on together. Resilience, determination, and love have helped Artem build the life he chose to live.

DIRECTOR

Gianpaolo Bigoli

PHOTOGRAPHER

Marco Gualazzini

DISEASE

From the Director’s Perspective

Artem lets us into his life, amid his passions, travels, work, and love. His body, in need of constant wound care, is not the focus of the story but the starting point for exploring the relationship between fragility and freedom.

Through his gaze emerges the story of a person who chooses not to be defined, and who keeps writing his own life freely.

Notes by

Gianpaolo Bigoli

Behind the Photographer’s Lens

I stared at the blank page for hours, searching for words that could give Artem the dignity he deserves. I wanted to speak of his polite manners, his good humor, his kindness, but the words wouldn’t come.

So I decided to look again at the photos I had taken of him, in search of a spark, and I lingered on one in which his dressings are being changed.

And what struck me personally, in this half-light from which he emerges, is the resolute gaze with which, from on high, he seems to face down all those scars, all that endless bandaging: with courage, with nobility of spirit, with disdain.

Notes by

Marco Gualazzini