Author
ELPA

European Liver Patients’ Association is calling all people living with Primary Biliary Cholangitis to speak out about the condition to tackle stigma associated with liver diseases

To support this year’s theme for international PBC day 2017, ‘PBC and Me’, ELPA, along with other 14 associations worldwide, is calling for all the people living with Primary Biliary Cholangitis (PBC) in Europe, to share their experiences of living with the condition on social media. Through sharing stories, ‘PBC and Me’ aims to shine a light on the ‘hidden’ physical and emotional symptoms of the rare auto-immune liver disease. The campaign also aims to address the common misconception that liver diseases are caused by excessive alcohol consumption, which can lead to blame-related stigma for those living with the condition. 

Whilst PBC can affect men and younger people, it is most commonly seen amongst women over the age of 40. Common symptoms are extreme tiredness, abdominal pain and an unpleasant ‘under the skin’ itch. These symptoms are hidden and may vary from day to day, so it can be challenging for family, friends, employers and colleagues to understand how it feels to live with PBC.

For the first time ELPA is uniting with patient organisations around the world to raise awareness of PBC and help reduce stigma. Tatjana Reic, President of ELPA, comments:

We are very excited to be part of a global movement whose aim is to raise awareness on this progressive autoimmune disease.  ELPA as an umbrella association with its members in 27 European countries, would love for everyone to get involved, even if they do not have PBC or know anyone living with it. The more people there are talking about PBC and liver disease the greater impact it will have.

 

 

By posting photos and videos on Twitter, Instagram or Facebook, using the hashtag #PBCandMe those affected by the condition will raise awareness and explain the emotional and physical impact of PBC. ELPA will also be sharing statistics and information about PBC on our social media channels Twitter and Facebook. The general public are invited to like or share posts to show their support.

 

PBC Day is an international campaign to unite those affected by the condition across the globe. This year, PBC Day will also be supported by the following organisations:

  • European Liver Patients' Association

  • PBC Foundation, UK

  • Dutch Liver Patient Association - NLV

  • Liver4Life, UK

  • Hepatitis Hilfe Österreich, Austria

  • Canadian Liver Foundation, Canada

  • Leverforeningen Denmark, Denmark

  • The Finnish Kidney and Liver Association, Finland

  • ALBI, France

  • Leberhilfe Projekt gUG, Germany

  • EPAC Italia, Italy

  • Forening for autoimmune leversykdommer (FAL), Norway

  • Rarissimas Portugal, Portugal

  • PBC föreningen, Sweden

  • PBCers Organisation, USA