PBC Foundation
6,289 members5,561 posts

Hey this whole PBC name change is great behind it 100 %

Hey this whole PBC name change is great behind it 100 %

I did the survey and with a background in OR the new name takes the stigmas as a matter of fact I started using it as my own little test sample and people's whole expressions have changed they still don't know what it is but taking our cirrhosis make a difference

3 Replies
oldestnewest

I am not entirely convinced by the idea of a name change. The cirrhosis is a very real fact of life for a lot of us. I also think that changing the name could undermine our need to have this stupid disease recognised as life changing - so if the name is to be changed, it should be changed to something that reflects how unpredictable, life changing, uncommon and misunderstood it is

1 like
Reply

The stigma attached is too great. No matter the name you would still have to explain it. You can tell them it can lead to cirrhosis if you choosr

1 like
Reply

I agree with SC49 and ziggy bean. We have what we have and we will always need to give people who don't have it an explanation of what it is. I don't really care what other people assume from the name I just want my family to understand and professionals e.g. Gp's, benefits agencies etc know more about it and to take it seriously

1 like
Reply

You may also like...