Changing the name of PBC - please fill out the survey for the PBC Foundation

[SheepJane]

Just an extra post to endorse Robert's post - please do find his post and fill out the survey.

The survey is about our (as patients or healthcare professionals) attitude to the word "Cirrhosis".

The foundation need evidence of what we all think to present their case.

I for one would love the word "Cirrhosis" to be changed to "Cholangitis" !

[Hidden]

Hello SheepJane.

I would like a name change of PBC but for me I don't like the word 'cholangitis' as I find that certain minor ailments like tonsillitis, laryngitis, etc are temporary and I think that cholangitis could be misleading too.

Cholestatis to me seems mroe appropriate but that's my way of thinking.

I know I refer to mine as Pretty Bloody Crap thing!

I know that when I've mentioned it to a very select few people who know me (excluding family members) it's the 'cirrhosis' that prompts some question or comment. For the few I have mentioned I don't give it its full name, just the abbreviations and then I would say my own body is attacking bile ducts within my live and bile seeping out irritates my liver which can then make it unable to function 100%.

I am sure going back in time PBC was called something different but no idea where I saw it now, just think I am right there.

[Esmerelda19]

As a health care professional and a patient I had never heard of PBC or had ever met a client/patient with it. My family and friends initial reaction was "but you don't drink Alcohol". Cirrhosis to many suggests alcoholism or addiction and ultimately transplant or premature death. I agree with the previous comment that cholangitis suggests a more trivial and curable or self limiting illness and could understate how debilitating the symptoms of the disease can be. From my experience PBC is already poorly understood by many health care professionals including physicians which does not help patients who then have to manage and explain the disease and it's effects to their families, friends and/or their employer. Any change that can help the disease be better understood will always be of benefit to those affected by it, but it should not be simplified/altered to the point that it trivialises the very real effect PBC can have on the lives of its sufferers.