On the occasion of World Hidradenitis Suppurativa Day, celebrated on June 6, 2025, a press release was issued to launch the book VISI – Lives of People with Hidradenitis Suppurativa in Italy. The volume, the result of a project led by ISTUD Sanità e Salute, in collaboration with Passion People APS and with the non-conditional support of Novartis, gathers 81 narratives from patients, caregivers, and health professionals, using a narrative medicine approach to explore everyday life with this chronic and often invisible disease.
Read the press release, published in Italian, here:
The VISI project aims to break down the stigma and communication barriers surrounding Hidradenitis Suppurativa (HS) through listening and giving voice to the lived experiences of those affected.
The collected stories are now available in a free downloadable book, published in Italian, which can be read here >>>
We asked Giusi Pintori, President of the Passion People Association, what this experience left her with:
There was a moment during the VISI journey when I heard the sound of silence becoming louder than words. When the narratives of those living with hydrosadenitis suppurativa intertwined with those of the clinicians, I recognised the same impetus that drove me years ago – and that I still feel more and more – to stop in that ‘country without a name’ which I often speak about: the land of hidden wounds.
Participating in this narrative research meant opening the windows of that inner land again and letting the air carry the stories out, so that they could return to someone in the form of a cure. VISI gave me, once again, tangible proof that, when science becomes listening, skin and soul stop standing on two separate tracks: they become a single path that can be travelled together, patients and professionals, without boundaries or rigid roles.
The power of reciprocity pervaded me. I offered my experience and expertise, my long years of commitment and my voice; I received in return a chorus, an echo of new awareness. The pages we wrote with many hands transformed anger into a shared lexicon, shame into a space of dignity. I saw the faces – the “VISI” (in Italian “Visi” means “Faces”) – light up when someone recognised themselves in the other’s tale: an instant when loneliness crumbles.
Narrative medicine is a new pair of glasses: a structured empathy. No longer just ‘listening’ – that’s where I started from – but letting words settle into a texture that orients clinical choices, that suggests more than just policies, that protects frailty without pity. It is a compass and a map in our climbs for the right to care.
This project also touched a deep and inherent part of me: that of my role as a facilitator. Every day, in different contexts, I work alongside people experiencing chronicity, exclusion, fragility. I accompany, with constant and discreet steps, paths of awareness and change. VISI has given shape and voice to this daily commitment: it has made visible what often remains implicit, it has transformed the relationship into a tool for shared growth.
If I take home an image, it is that of having built passages through stories: each testimony shortens the distance between our ‘hidden country’ and the outside world. Thank you for allowing me to experience, together with my PASSION PEOPLE APS ‘brothers’ and the doctors who walk beside us, a new path. We will continue to move forward, to build a solid and bright road, crossed by everyone who seeks listening, care and dignity.
VISI is not just a publication, but an invitation to reconsider the role of listening, storytelling, and empathy in healthcare. An invitation addressed to everyone: physicians, institutions, patients, and citizens.
Press Review
The publication of the VISI project has already sparked interest in industry and national media. Among the first to cover it are Italian-language articles from:
TECNOMEDICINA.IT – VISI – Lives of People with Hidradenitis Suppurativa in Italy
PHARMASTAR.IT – Lives of People with HS in Italy: 81 Patient Stories to Understand the Disease
QUOTIDIANODELLASALUTE.IT – Do You Know Hidradenitis Suppurativa? VISI Gives Voice to Those Who Suffer in Silence
AGENZIAOMNIAPRESS.COM – World Hidradenitis Suppurativa Day: The VISI Project