New PBC Education site

[LisaC22]

Just came across this on Facebook tonight. Might be of interest to some. Appears to be new but notice they are unfortunately still using the old name:

livingwithpbc.com

[PCBnPBC]

I like the old name, I was "brought up" on the old name, as far as my encephalopic brain is concerned my initiation to PBC was my ultra scan where my liver was completley Chihorrosed, (spelling?) so PBC to me needs that word in it, what is Colangitis?

Will look in on the FB site, thanks for sharing!

[Hidden]

Thanks for the posting LisaC22.

Not seen this site before, will have a look through it later but looks interesting at a glance.

My GP surgery is still using the original PBC terminology. I decided I was not going to bother informing the GP when I saw her July and see at some point when it is noticed. I have enough hassle retrieving a print-out of my bloods as it is.

I can't say I liked the old term as to a few I did spell the full name of PBC out to I did get the drinking alcohol question but I didn't agree to this new change as to me it sounds a bit too mild and my first thought about 'cholangitis' was it sounds something like tonsillitis, gastroenteritis, things that you can be cured of.

Regardless though it is still PBC and I've still got it and will remain to do so unless one day someone out there stumbles across or finds a cure.

[dollydaydreams in reply to Hidden]

I didn't bother to tell my GP last week, infact I didn't even cross my mind.

I have a consultand ( gastro ) appointment now but back another month I find, I doubt he will know or say anything about it, he seems more interested in looking at his watch.

[Shine1]

Thanks for the link, any sites or info are helpful.

[butterflyEi]

PBCers.org put this up on their Yahoo Groups site which can also be accessed through FB. I thought the story of the contributor reflected the story that so many have at diagnosis. As this page is supported by a pharmaceutical company I hope that they will be doing some research for PBC sufferers. At least it is raising awareness on yet another level.

[LisaC22 in reply to butterflyEi]

The page is supported by Intercept - the pharmaceutical company who developed obeticholic acid (OCA) - hopefully the alternative to URSO, for non-responders.

[PBCRobert Partner]

As Lisa said, Intercept is supporting the page. The idea is that the page is primarily for those in America. That said, much of the information could be universally helpful.

I have been informed that they will be incorporating the new name very soon.

The old name is just that: the old name. I shall write at length shortly with regards to the amazing difference in my experiences talking to healhcare practitioners after the new name started being used but it is absolutely immense in the difference in attitude, even from professionally qualified medical staff!!

I would ask each of you to support the new name: for many reasons. I absolutely support that there are people who have cirrhosis because of their Primary Biliary Cholangitis and we shall do everything we can to support anyone affected by PBC: cirrhotic or not.

So, please take the time to speak to your GPs and/or nurses and/or consultants on this matter. We have leaflets that we would be delighted to share with you.

In terms of a potential cure: it may not be as far away as most poeople fear. We cannot break confidentiality but there is much work on PBC being carried out as we speak with many different mechanical pathways within the body being investigated. There are clinicians with their fingers on the pulse that are looking at potential cures "just around the corner". Unfortunately for us, "just around the corner" in research teams is more years than weeks or months. However, people are now talking about years and not decades.

So, remain hopeful. We are.