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

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  • 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

  • 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

  • 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

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