Autoimmune-related liver diseases deserve greater awareness and better research

AIH, PBC and PSC are all autoimmune-related liver diseases, each in their own way. In AIH, the immune system attacks the liver cells themselves, while in PBC the small bile ducts inside the liver become inflamed. PSC, by contrast, affects the larger bile ducts, both inside and outside the liver, gradually obstructing the flow of bile. Despite their differences, the three conditions share the same reality: they often go unnoticed for years, because symptoms are vague, fluctuating and non-specific.

Fatigue, itching, abdominal pain, reduced concentration, muscle weakness or unexplained abnormal lab results are often experienced by patients themselves as “odd, but not serious”, or dismissed by those around them as stress or a busy schedule. Professor Helena Degroote captures this sharply in her book: “A sick liver rarely shouts. It whispers. And if you don’t listen, you quickly assume nothing is wrong.” That invisibility means diagnoses are often made late, sometimes only when the liver has already suffered damage.

In recent studies, Professor Maridi Aerts highlights how serious the consequences can be. According to her, the impact of these conditions is still too often underestimated: “We see patients walking around for years with symptoms they cannot explain. Fatigue is a daily reality for many, but because there is nothing visibly wrong, they are told not to exaggerate. By the time a diagnosis is made, the damage is sometimes already irreversible.” Aerts therefore calls for greater awareness among both GPs and specialists, as well as for structural research into better treatments.

While effective immunosuppressive therapies often exist for AIH, and PBC can usually be treated well with medication, PSC remains one of the most challenging liver diseases. Its course is erratic, often unpredictable, and there is currently no medication that can truly halt its progression. For some patients, a liver transplant ultimately becomes the only option.

That uncertainty and unpredictability take a heavy toll. Precisely for that reason, understanding matters. Helena Degroote put it like this in an interview: “People think liver disease always comes with jaundice or visible symptoms. But on most days, you can’t see anything wrong with me. That doesn’t make the burden smaller, just less visible.” Her words resonate with many people living with a chronic liver condition. Patients are not only battling the disease itself, but also misunderstanding, doubt and sometimes outright disbelief from those around them.

Knowledge is the key to change

The Warmest Week offers an opportunity to make these invisible conditions visible. It reminds us that connection, attention and empathy are not luxuries, but necessities, especially for those living with a disease that others cannot immediately see. It is about listening to complaints without obvious outward signs, taking people seriously when they say their energy is gone, and recognising that living with a chronic illness often means every day is different and unpredictable.

Both Aerts and Degroote stress that knowledge is the key to change. As Degroote puts it: “The more people understand what a sick liver does to your body, the less we have to explain that we are not lazy, not ‘tired in the head’, but genuinely ill.” And according to Aerts, this also places a responsibility on the medical community: “We need to learn to recognise the liver’s whisper sooner. Not wait until it starts to shout.”

By making AIH, PBC and PSC more visible, we create space for earlier recognition, better care and, above all, greater humanity. That is exactly what the Warmest Week stands for: offering warmth to those who need it — also, and perhaps especially, when the illness is invisible.