HEAR THEIR JOURNEY.

Unearthing the emotional burden of living with primary biliary cholangitis (PBC).

PBC is a progressive, rare liver disease, characterized often by debilitating symptoms such as itch, fatigue or depression that can significantly affect daily life. The impact of these symptoms is often unseen and rarely spoken about. For many, the emotional and physical burden of PBC remains invisible in everyday conversations.

All the Feelings with PBC seeks to amplify the stories of people affected. Through art, film and fashion, we are translating what is left unsaid, left unseen. Art is emotive, and for people living with PBC the emotional burden is real. By providing a platform to show lived experiences in different formats, a spotlight is shown on the invisible aspects of the disease.

Art also connects, and here we seek to connect unique stories with others who are living with PBC, their loved ones and healthcare professionals.

ART

Art can tell powerful stories. Berlin-based artist, Nour Khwies, translates the experiences of people living with PBC into paintings, vividly portraying the daily challenges of living with PBC and amplifying their emotions. Each piece of art is unique to the person, highlighting the difficulties they face that may not always be visible.

Hover over the paintings to find out more. Click for a full screen view.

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“You want more people around you to know what you’re going through. That’s what was really, really helpful to me.”

Angela (Scotland)

“PBC is one of these invisible diseases that people have to deal with. It can be difficult sometimes to diagnose and so it can be years before people actually get the diagnosis.”

- Carrie Frenette, Executive Director, Global Medical Affairs, Gilead Sciences

Invisible

“This is a chronic liver disease that is unfortunately invisible to the outside world. So, you don’t see it at first glance.”

Dilek (Germany)

"It’s frightening to get a new diagnosis, but it’s even more frightening to be left alone. To be in the room with other people with PBC gave me a different perspective.”

L.Marie (United States)

“Having PBC is not who I am. I have the disease. I have to live with the disease but I am also other things.”

Joana (Portugal)

“I would describe PBC as a very frustrating disease. My emotions ran up and down. But I want to tell people there is a chance, there is hope.”

Sheldon (Canada)

“PBC is not an emergency case, or a temporary situation. The person lives with it, and living with it means you have to deal with it throughout your life. You have to find your own way in your innerself to get over that, to live life.

“I had a lot of feelings [listening to everyone’s personal stories]; it’s really emotional. I could feel how they were trying to give more but their bodies would not help them along. You can’t see it from the outside, it’s really so much work inside their innerworld. From outside they try to do their best to be normal, to be effective, which is not easy. I really respect that a lot.”
- Nour Khwies

FILM

A documentary short film by director Jay Weneta depicts the journey of Joana, who lives with PBC. In this documentary, called ‘UNSEEN’, Joana shares what it is like to live with the condition, and how the debilitating symptoms she experiences affects her daily ongoings. Click to watch the video.

FASHION

During New York Fashion Week 2025, fashion designer Mondo Guerra brought to life the emotional and physical experiences of those living with PBC by designing wearable art pieces and showcasing them on the catwalk to advocates, healthcare professionals and those with an interest in fashion. The wearable art pieces were inspired following interviews with people in the U.S. living with this progressive, rare liver disease, and brings to life their story and experiences.

Carrington
Self-love

Jenny
Sun

Naveen
Passion

Sheldon
Fashion

ABOUT THE CAMPAIGN

Launched at the European Association for the Study of the Liver (EASL) Congress 2025, ‘All the Feelings with PBC’ is a campaign to elevate the lived experiences of people with PBC. Often, the emotional burden and symptoms of PBC, including chronic itch and fatigue, are under-recognized in clinical practice.

This art-driven awareness initiative was developed by Gilead, in partnership with the PBC Foundation and community ambassadors, to raise awareness among healthcare professionals and encourage more open and honest conversations between them and people living with PBC, as well as loved ones.