There is little data on the quality of life of PBC patients. There is also a lack of data on which self-management strategies reduce the burden of symptoms and thus have a positive impact on quality of life. Kautz5 collected this data for the first time.
Primary biliary cholangitis (PBC) - a disease with many faces
In PBC, the small bile ducts in the liver are damaged by autoimmune processes. If left untreated, this can lead to inflammation, which can also affect the surrounding liver cells and lead to scarred remodelling of the liver tissue (cirrhosis).
PBC is one of the rare diseases and is spread very differently around the world. In Germany, the number of PBC patients is estimated at around 35,000, of which around 30,000 are undergoing treatment. The majority of those affected are middle-aged women. However, there is epidemiological evidence that PBC is also increasingly occurring in men at a younger age. The therapeutic options for preventing the progression of PBC are good, but there is still a clear need for action in the area of symptom management.
Examples of our project work
www.pbcnews.info
The central information platform was revised in close cooperation with patients.
PBC Tour 2024
Together with the PBC community, we have organised a tour through 5 cities in Germany. In interactive workshops, we are actively supported in part by committed PBC patients.