Just to inform you that PBC will now be known as Primary Biliary Cholangitis.
There are many people round the world who worked hard to make this happen but there is much to be done to now publicise the change.
Our new (coincidental) website will be live very soon; our new leaflets will be available, also. Our new Compendium will also cover a little about the name change.
I know not everyone was in favour but the vast majority of patients, patient advocates, health professionals, and industry professionals were very much supportive of this progressive step.
There is a paper being written and sent to the major hep and gastro journals informing them of the change and to edit any forthcoming papers.
Yours,
Robert.
Written by
PBCRobert
Partner
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In this case and due to UK medical records for patients being online now even if very basic at the moment as mine are, should I ask my GP to update mine to say the new name for PBC as mine does state the original name.
I am not actually sure if my GPs will be aware of this name change, mine wasn't aware in 2013 regarding the withdrawal of my 300mg urso tablets.
As it stands now, very few people are aware of the name change. So, we each have the opportunity to spread the word.
So, yes- do tell your health professionals about this change. Also, feel free to contact the office to put yourself on the waiting list for the new leaflets when they come out.
Yours,
Robert.
P.S. I've corrected the spelling above!!! The joys...
Yes I will request the new leaflets when they are published.
I have been to see my dentist this morning and he has been looking up PBC since I informed him I had this over 4 years ago now. I told him that PBC has recently had the last part changed.
Thanks for letting us all know. I will let my GP practice know asap.
Meanwhile, I wonder if it will be worth re-posting the information on here, a few more times over the coming weeks? I've noticed that very few people respond to the posts at weekends, suggesting that they are out, or busy with family etc. Obviously I don't know if people look back at the posts they've missed when they do 'clock in' again in the week.
Also, I think some people do only come on here when they have a question to ask, and don't seem to keep up with posts they've missed, as some posts that trend a lot, do still pass others by. I know if I've been away, for a few weeks, then I don't tend to catch up on missed posts.
Thanks for all the work you - and all the others at PBC F - do, and thanks for all the effort in getting this change made.
I would like to echo your thoughts and thank all those involved for getting the change pushed through.
I would also ask if there is a way to keep this sort of post at the top of the list for a while - some kind of yellow note pinned to the top of the day (?) - I am away at the moment and would have missed this completely if I had not come on here for a look after receiving the Bear Facts email.
best wishes and thank you for your answers which I always find so much to the point
I was diagnosed with Primary Billiary Chirrosis (PBC) I usderstood why it was called this after explanation.
I looked up the word Colangitis on our old friend Google. and the top results returned these first lines :
Cholangitis is an infection of the biliary tract
is an infection of the bile duct (cholangitis), usually caused by bacteria
Acute cholangitis is a bacterial infection superimposed on an obstruction of the biliary tree most commonly from a gallstone,
Acute obstructive cholangitis was defined by Reynolds and Dargan in 1959 as a syndrome consisting of lethargy or mental confusion and shock, as well as fever, jaundice, and abdominal pain caused by biliary obstruction. These five symptoms were then called Reynolds' pentad.[1]
PSC is an uncommon chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring (fibrosis).(chirrosis is it??) (British Liver Trust)
Is it a disease that I had? was it an infection? a bacterial infection? it seems so wrong to me to change the name, is it the word chirossis you are all scared of? and if so why? if another reason what is it?
I would have to agree with you. I have been diagnosed for about a year (undiagnosed for 12 years). While I appreciate the time and effort put forth as well as the good intentions to change the name, I think changing the name creates more confusion, especially if the new name doesn't describe the disease properly. It would be far better to educate people on what Primary Biliary Cirrhosis actually is. Having the disease is nothing to be ashamed of. It is not our fault. We should not allow a stigma or shame to be associated with it. Changing the name, in my opinion does that. It just goes against my grain to cower and change due to other people's misconceptions.
we see eye to eye here. I hear people say much effort went to get agreement in a name change, so it is a shame not to adopt it fully. I say it was a shame people went to that effort.....I am comfortable with Chirossis, it describes how my liver is (was) and if people assume my journey involved pints of spirits and beer and wine, so what? some peoples journies do involve alcohol consumption, either as addiction (which needs help) or ignorance (which needs education) and PBC offers a chance to discuss alcohol consumption if misunderstood!
Good luck with your journey! Stay strong, live life, enjoy.
I am not sure if it is fully appreciated or known how this name change was made. There seems to be a perception that the word Cholangitis was plucked out of the air and then the PBC Foundation unilaterally made the decision to change the name.
Thankfully, that wasn't how it happened.
The name change initiative was, indeed, led by the Foundation but there were patient organisations in Europe and the US who were involved. On top of that, there was a patient survey that was over 80% in favour of a name change. This survey was live for over a year and well publicised. The answers came from all around the world, covering all the continents. It was answered by patients, by patient advocates and by health professionals.
In partnership with some of the finest medical minds in PBC-in EASL, AASLD and APASL- the decision was made, firstly to keep the initials PBC. This would help re international branding, etc as well as minimise any change to be introduced.
That left us all with the question, "What should PBC change to?" The main options were cholangiopathy, cholestasis and cholangitis. Did you know that a previous name for PBC actually had cholangitis in the title? You can guess why: most people with PBC actually do have cholangitis.
Cholangitis refers to inflammation more than infection. That said, I cite the world's top hepotologists and internationally renowned PBC specialists. I don't use google.
In partnership, in discussion over many months consulting literally thousands of people, the decision to use PB Cholangitis was made.
Only 15% of people with PBC ever, EVER, develop cirrhosis. That leaves 85% of people with PBC who will never have cirrhosis. That PBC doesn't include cirrhosis does not negate or minimise the experience of those who do. There are plenty of liver conditions that can lead to cirrhosis (in probably bigger numbers than PBC) that don't have "cirrhosis" in the name: hepatitis a onwards, haematomocrosis, etc etc etc.
And so, it is what it is. I absolutely believe it will change the lives of people with PBC for the better. Anything to break discrimination, stigma and isolation can't be all bad.
So, I would ask you to join us in sharing this news; to make the change as swift and as easy as possible; to inform and educate the public, the health professionals, the patients, their friends and their families about what PBC is, and how best to live with the condition in a long, fulfilled and happy life.
I had an appointment last week with my gastrenterologist. I asked him if he new pbc had changed its name. He said oh whats it called now. I told him and he seemed amused by it. I think I will have to send him a leaflet.
mone did not know either and like u seemed ''amused'' telling me something about american liver and european liver!! im French living in the USA !! OH WELL!!
Leaflets are available from the Foundation: patient, general public and healthcare practitioners each have leaflets written for them specifically in mind.
Please contact the Foundation directly and we can send you any leaflets you wish to share.
im confused ! im in the US ive had PBC since 2002 ,doing great! ! my liver specialist knew nothing of the name change! and told me it was wrong ,that i did not have CHOLANGITIS! he sort of had a bitter sweet remark about '' the american liver and the european liver'' anyway i see him twice a year been on urso [500mg twice a day] since 2 002,have lots of energy and just retired but looking now for a part time job!
Thank you very much for advocating for the new name!!
Sometimes it was a bit awkward saying I had Cirrhosis of the liver. I was always asked how much I drank, it felt good educating people the true meaning of the word..
I went to a new gastro a few days ago and told him about the name change and he just said it's the same disease so why change the name? He treats mostly alcoholic cirrhosis. I am not going to be his patient.
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