LIGHTNING RELEASES: Pearland, TX (9/24/2014)- The PBCers Organization today called for a global name change of the chronic liver disease, Primary Biliary Cirrhosis (PBC) to Primary Biliary Cholangitis. While cirrhosis is largely associated with alcoholism, PBC is not caused by alcohol or substance abuse. Yet, those affected by the disease deal with the stigma of cirrhosis- even by some medical professionals. The PBCers Organization is partnering with the PBC Foundation UK and other groups around the world on this initiative.
Global survey results were released at this summer’s 12th Annual PBC Conference and show that the majority of PBC patients and health care professionals are unhappy with the word cirrhosis in the name of the disease (81%) and want the name changed (87%).
“When I was first diagnosed with PBC, I overheard two nurses commenting that I didn’t look like an alcoholic. That’s because I’m not,” said Linie Moore, Founder and President of the PBCers Organization. “It’s hard enough being diagnosed with an auto-immune disease but to also be accused of being an alcoholic is devastating.”
“There is a widespread misunderstanding about PBC and a need for greater awareness,” said John M. Vierling, MD, FACP, Baylor College of Medicine in Houston. “Since cirrhosis occurs only in the late stage of PBC, the name primary biliary cirrhosis is actually a misnomer for patients in the earlier stages of the illness. The more technically correct and ponderous term for PBC is chronic non-suppurative destructive cholangitis.”
Along with Vierling, other top liver specialists leading the charge on the name change include Robert Gish, MD; M. Eric Gershwin, MD, MACR, MACP; Keith Lindor, MD; Carlo Selmi, MD; Christopher Bowlus, MD; and Kris Kowdley, MD.
Women are affected 10 times more than men, and PBC is usually diagnosed in patients between the ages of 35 to 60 years. Those with PBC usually look extremely healthy, and many are 10 to 30 pounds overweight. The outward appearance doesn’t tell the story of what is going on inside their bodies.
While there is no cure for PBC, several pharmaceutical companies are working to develop new treatments for PBC.
The global survey was conducted online consisting of nearly 1,000 PBC patients and health care professionals by The PBC Foundation UK.
About The PBCers Organization
The PBCers Organization is a nonprofit charity whose goal is to unite people with Primary Biliary Cirrhosis (PBC), help them cope with this chronic liver disease, and improve their quality of life through support and education.
About Primary Biliary Cirrhosis (PBC)
Primary Biliary Cirrhosis (PBC) is a chronic liver disease that slowly destroys the bile ducts within the liver (intrahepatic bile ducts). Liver inflammation over a period of years may cause scarring which leads to cirrhosis. The cause of PBC is still unknown, but it is an autoimmune disease in which a person’s immune system attacks itself. It is not caused by chronic viral infection, alcohol or drugs. Current studies suggest that infections or environmental toxins may trigger autoimmunity in people with a genetic predisposition. Women are affected 10 times more than men, and PBC is usually diagnosed in patients between the ages of 35 to 60.
CONTACT:
Carrie Yamond
CYNYPR, Inc.
917-371-2320
carrie@cynypr.com
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