SOURCE: The PBC Foundation

The PBC Foundation

September 12, 2014 03:00 ET

International PBC Day Is 14 September

PBC Foundation Calls for Greater Awareness and Education About Primary Biliary Cirrhosis (PBC)

EDINBURGH, UNITED KINGDOM--(Marketwired - Sep 12, 2014) - The PBC Foundation announced today that Sunday, September 14 is the third International PBC Day, a time to raise awareness, support new research and celebrate the stories of people across the globe living with primary biliary cirrhosis (PBC).

PBC is a progressive, auto-immune liver disease, not related to alcohol or drug abuse. 90% of sufferers are women and as many as 1 in 1000 women over the age of forty may have PBC. Fatigue and pruritus (itching) are the two main symptoms of PBC, but many patients are now diagnosed without symptoms. There is currently no known cause or cure for PBC.

"International PBC Day is part of the PBC Foundation's mission to increase public understanding of PBC and support the families living with the condition," said Collette Thain, MBE, chief executive officer of the PBC Foundation. "It is also a time to say thank you to our volunteers, many of whom have been competing in long-distance races and other endurance events to raise funds for PBC research."

One of the PBC Foundation's key initiatives in 2014 has been an effort to re-evaluate the name "primary biliary cirrhosis." Over the years, many patients and healthcare professionals have expressed concern that the term "cirrhosis" is misleading and contributes to confusion about the disease. While cirrhosis (scarring of the liver) can be a long-term complication of PBC, many patients will never develop cirrhosis. In an international survey created by the PBC Foundation, 81% of respondents reported not being happy with the name "primary biliary cirrhosis" and 80% stated they would support an initiative to change the name to "primary biliary cholangitis."

"Because it carries a social stigma associated with alcohol abuse, the term 'cirhosis' can be particularly problematic for people living with PBC," said Robert Mitchell-Thain, Development Officer for the PBC Foundation. "It is important for the general public to understand that PBC is not caused by alcohol abuse. These misperceptions about PBC can result in discrimination, including challenges obtaining insurance coverage."

"We have been greatly encouraged by the response to the potential name change among patients and medical thought-leaders," added Ms. Thain. "This is an exciting development that we hope will contribute to a better understanding of PBC."

Individuals and organizations interested in supporting PBC awareness and research are encouraged to visit The PBC Foundation's website at PBCFoundation.org.uk to learn more about opportunities to fundraise, donate or volunteer. For the newly diagnosed or those seeking to improve their understanding of PBC, the Foundation's website also offers informational brochures, support services and the latest PBC research news.

About the PBC Foundation
The PBC Foundation (UK) Ltd. is a charity offering support and information to PBC sufferers, their families and friends. We serve members in over 65 countries around the world.

The PBC Foundation offers a range of services that include a helpline, the PBCFoundation.org.uk website (with a separate section for members), a comprehensive compendium on PBC and a quarterly magazine that includes clinic pages written by world eminent PBC specialists. We also host a range of events which include members' meetings, self-management sessions and medical conferences.

The PBC Foundation issues a quarterly newsletter and can put you in touch with others that have PBC.

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