A "silent killer" of young men. The disease is difficult to recognize and has a hidden course.
- PSC is an incurable liver disease that mainly affects young men.
- The symptoms of PSC are nonspecific, making early diagnosis difficult.
- Warsaw conference focuses on improving the quality of life of PSC patients
Primary sclerosing cholangitis (PSC) is a rare, insidious, and incurable disease that primarily affects young men. Its symptoms can be confusing, and patients seek help for months before receiving a diagnosis. Liver transplantation often proves the only solution. Friday's scientific conference at the Medical University of Warsaw , with experts from around the world, will be dedicated to this condition.
Hidden PSC route"The disease progresses insidiously. Initially, symptoms are nonspecific—chronic fatigue, persistent itching, and sometimes diarrhea. This means that many patients come to us only at a very advanced stage. In such cases, a liver transplant may be the only option," said Prof. Piotr Milkiewicz , head of the Clinic of Hepatology, Transplantology, and Internal Medicine at the Medical University of Warsaw and the Center for Rare Liver Diseases , a member of the European network of reference centers.
PSC is classified as an autoimmune disease. The patient's immune system begins to attack its own bile ducts, leading to their narrowing and liver destruction. This can result in recurrent infections, sepsis, or the development of aggressive bile duct cancer, which occurs in up to 12% of patients.
" We don't have any effective pharmacological methods . Liver transplantation saves lives, but it doesn't solve the problem, because the disease can recur. It's a huge clinical and psychological challenge for patients," emphasized Professor Milkiewicz .
According to research from the Medical University of Warsaw, up to 20% of patients with PSC are unable to function normally. "This isn't the usual fatigue we're all familiar with. It's a debilitating symptom, preventing work and daily activities. In addition, there's itching, which can be so persistent that cases of suicide have been described in the literature. Patients often withdraw from social life and feel excluded," the hepatologist pointed out.
Over 30 specialists from Europe, the US, and Australia will debate these issues on Friday. However, the meeting will not be a typical medical symposium. "We focus on patients' quality of life, not just test results. We want to create a tool—a questionnaire—that will allow for an objective assessment of the burden of disease on patients. This is crucial when evaluating new therapies," announced Professor Milkiewicz .
The conference will also be attended by psychologists, quality of life scientists, and patients themselves, who will share their experiences.
The special guest will be Mariusz Jop , former Polish national football player, currently coach of Wisła Kraków, who underwent a liver transplant due to PSC 13 years ago.
"He's an extraordinary example of fortitude. He played in the top league and for the national team, even though the disease was already ravaging his body. His story shows that even in such dramatic circumstances, you can fight and win," emphasized Professor Milkiewicz .
The conference reflects the growing interest in rare diseases in Europe. For years, the Medical University of Warsaw has been a member of the elite European Reference Networks (ERN) , which brings together the best centers specializing in the diagnosis and treatment of these conditions.
- We care for over 2,500 patients with rare liver diseases - this is the largest group in the European Union treated in a single center - the professor pointed out.
The conference on primary sclerosing cholangitis will be held on Friday, September 20, at 10:15 a.m. at the Library and Information Center of the Medical University of Warsaw (ul. Żwirki i Wigury 63, Warsaw).
The organizers emphasize: "This disease needs to be talked about. The earlier a diagnosis is made, the greater the chance of effective help for the patient."
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