Taking the "Cirrhosis" out of PBC

[PBCRobert]

You will be delighted to read that we are knocking on the doors of a wonderful opportunity.

There is an international initiative right now building momentum towards a great day for all people affected by PBC. We (more on that later) are on the cusp of changing the name of "Primary Biliary Cirrhosis."

We know that most people with PBC don't have cirrhosis. We also know that people with PBC have issues obtaining even the simplest of things: life insurance, mortgages, travel insurance. And yes, we know, too, that you don't drink.

So, the time has come. We are about to implement an enormous change. But who are "we"?? Well...

There is support amongst other patient organisations. We have been working particularly closely with Deutche Leberhilfe and ELPA and we have the support of many others. We have the support from many prominent PBC physicians, including some of the most world eminent PBC specialists on both sides of the Atlantic all fighting in our corner. We even have the support from many in the pharma industry.

We have been asked, as an organisation, many times by our members if we could change the name of PBC. I, for one, never expected to see this day in my lifetime and I cannot describe to you the joy deep within me that this is where we are: right on the edge of making one sweeping change that will improve everyday life for thousands of our members. We clearly have the mandate from our members but what we need now are statistics to support that assertion.

So, we have compiled a questionnaire that we need you to answer. We have been invited to speak to PBC specialists in Milan at the monothematic PBC conference hosted by EASL (European Association for the Study of the Liver). With the answers given in the survey, we want to show the medics how strongly our members feel about the word "Cirrhosis" still being in the name PBC. We want to show that Primary Biliary Cirrhosis is more than just a name. We want to show that, just with the inclusion of that one word, people with PBC are actively discriminated against.

So, will you help us??

All we ask is that you take a few moments to fill in this survey. I hope it is visible as a link. If not, just copy the text and paste it into your web page address bar. With your answers, with your opinions, with your experiences supporting us, we can take this to the doctors at EASL and fight to make the change possible.

surveymonkey.com/s/PBCnamec...

We are almost there. Help us on the final hurdle.

Yours, as ever,

Robert.

[cavi]

Hi Robert So glad to hear that news I will fill the questionnaire in right now .

[Jill68]

Questionnaire done

[RebeccaM]

I have Cirrhosis and im 19 so I dont mind the name since it is true for my case. However I am aware other people who have PBC dont have cirrhosis and are not happy with the name. I'll do the survey

[Karaliz]

RebeccaM you are a remarkable young woman. I admire your grit enormously. The news that I now have cirrhosis was given to me recently and I found it a huge mental hurdle so well done you for being so philosophical at your young age. As Robert says we with cirrhosis are in a minority so a name change would be a marvellous achievement. Of course I will fill in the survey.

Karaliz.

[RebeccaM in reply to Karaliz]

Yea we are a minority lol which is great the less people with cirrhosis the better ^_^ I am only stage 2 so not a big deal. PBC doesnt really effect my life its just something i HAVE. To be honest its my ITP that causes the most problems. I dont have just normal pbc..i have pbc/aih overlap syndrome, so that may have caused my cirrhosis earlier or whatever What stage are you if you dont mind me asking <3

[PBCRobert Partner in reply to RebeccaM]

I am slightly unsure of info as stage 2 doesn't correlate with cirrhosis. (however, the AIH may be the key here)

[skippydownunder]

Good luck. It would be great if the name could be changed!!!!

[Nanbn2]

What a good idea. Survey just completed.

[Hidden]

Hi Robert, I have completed the survey.

[June9961]

The best bit of news I have heard in ages. Survey completed. Thanks

[meandmypbc]

Survey completed

[Newsroom]

Hi Robert , name change would be fantastic it would stop those knowing looks ! I have completed the survey. X

[Hidden]

Done..

[moepag]

Thank you, Robert! A name change would be a most welcome outcome! Survey complete

[h66black]

As I'm new to this diagnosed Feb trying to explain to friends and colleagues that it's not actually cirrhosis is hard work, so I for sure would be glad of the change. Survey completed

[Val02]

Done..ty

[Yvi1960]

Survey done. Let's hope this is an end to the discrimination some of us have had as a result of trying to explain the condition to others including my fellow health professionals.

[hotdog]

Questionnaire completed Robert.

[LindaSusan]

I would love to take the survey. How do I get the form

LindaSusan

[Hidden in reply to LindaSusan]

Hiya LindaSusan.

Just click on the highlighted blue link and it takes you to another window where the survery is and you click on the answers.

[PBCRobert Partner in reply to LindaSusan]

click below...

surveymonkey.com/s/PBCnamec...

[doublewhammy]

Great idea, the name is a hindrance. Survey completed. Good luck

[Abigail53]

I just completed the questionnaire and only just realized how secretive I am about my diagnosis for fear of discrimination in different forms. Wow. What an eye opener.

[cacoop]

Thanks for this effort. Just completed the survey.

[Maribella]

Hi Robert, I hope you're successful. I've just been diagnosed with PBC in January and already I'm fed up with having to explain that I don't have cirrhosis. Questionnaire done and dusted!

[periwinkle88]

I have completed the survey - thank you! Robert - I'm wondering if it is possible to somehow share this survey on the PBCers yahoo forum in the U.S.? I think you would get all kinds of support from the participants there.

[Kind_of_crazy]

Survey completed.

[archaeo11]

Done!

[KatyCaroline]

Questionnaire completed.

[LilianK]

Done....

[twink72]

Right on! Took the survey. Tired of over explaining the differences/meanings behind the very misinterpreted verbage.

[Blomst_64]

This is very interesting and sounds good. I am from Denmark, have you contacted the Danish liver organization ( we dont have a pbc organization apart from a small group on facebook called pbc danmark)

Survey completed

[Lindilou]

All done, completed

[nomorepies]

Survey completed. This is great news, I am tired of feeling that I have to justify myself when registering at a new dentist, or collecting my prescription from a new pharmacy etc by explaining that I have an autoimmune condition and that I don't drink alcohol.

[Disy in reply to nomorepies]

Yes me too. Everybody seems to give me a second glance when I say the word cirrhosis. I think I will take another members line and just say I have an autoimmune problem. Also mentioning disease does not go down well either. I try not to ket this control my life. I have too much to do. I was told to lose a little more weight and try to live healthy the best I can.

Best wishes to everyone

[Alley27]

Hi Robert I have filled in the survey. I am so please that someone has actually made a stand and we are perhaps on the brink of something really good. I have AIH/PBC overlap and have been turned away from a job interview after the word cirrhosis was mentioned. I don't or at least did not have cirrhosis two years ago when diagnosed.

conniefused.

[Hidden]

Hello I have just filled the survey out. I actually did think there might be a question asked as to why one with PBC thought that the last C for cirrhosis should be changed to the two suggestions that are mentioned.

I do think that any medical terminology to an ordinary person with no medical background but that could end in 'itis' (like tonsillitis, laryngitis, etc) could actually relay to someone else that PBC is actually something temporary and not something that could at one point in the future become quite life threatening.

I might be wrong but I am sure that originally PBC did have a differnt terminology many many years ago.

[PBCRobert Partner in reply to Hidden]

I am not sure anyone thinks PSC is temporary. There seems to be a few terms that have been tried for PBC. For me, I think the initials are important. I think it's important to take out Cirrhosis but to change the initials would create more difficulties than it would solve.

[NotorDJP]

I never tell people its PBC, I say I have autoimmune liver disease

[Hidden in reply to NotorDJP]

I don't actually tell anyone what PBC actually stands for if I don't have to. I know no sooner do you mention the word 'liver' too that causes the same old jargon that it could be alcohol related.

My usual script these days is to say the initials and then if asked further to say that my body produces its own antibodies that are attacking my bile ducts which in turn causes bile to leak into my liver causing a problem, words to that effect.

I find these days I don't actually tell anyone who knows me locally. I have some close friends who do know but I informed the ones I knew would not jump the gum so-to-speak.

I've had more hassle from nurses in reality since being diagnosed with PBC. I've only seen one nurse in the last 3yrs at GP surgery who actually looked up PBC prior to me going to see her for the bloods, the rest (3 - one was healthcare assistant) have been quite ignorant, one asked me on 2 occasions in several months I saw her for bloods how much did I used to drink!

[Puddles]

Survey done

[LindaSusan]

I did survey yesterday. I am delighted that the name will change and that the stigma will be thus removed.

However there is still not enough knowledge out there of this condition.

[EAJSWW]

I don't see the name itself as a problem. Cirrhosis means scarring! To those of us (and there ARE many) who progress to having cirrhosis, the name is very accurate. In a shiny world where people can have this disease for decades and still act as though they can take on the world, get to exercise everyday, and it affects them to a small degree, then that IS wonderful! BUT to many this disease is progressive.

Are we supposed to be ashamed we have cirrhosis? is it a dirty word? I never asked to have PBC or other auto immune diseases. It just is.... I would much rather time and effort be put into REAL education about PBC... and to also link it into all the other auto immune conditions that affect the liver.. I have had this diagnosis for over 12 years and can say that doctors and health professionals in the hospital and community still don't understand much about it. They don't understand about the symptoms we live with, or the affect it has on our life.

Yes you can change the name but we still have PBC, we still have all the same symptoms! Why not put effort to where it is really needed? Supporting those who need it now! Educating people now! and ignoring the ignorant people who don't understand the definition of one simple to understand word. I do not feel stigmatised, I feel ill. Reminds me of the rubbish people used to spout about HIV in the 90's (a dirty secret whose name shouldn't be mentioned) Come on everyone take responsibility for your condition, learn about it, and teach others about it.. I can guarantee that even if someone waves a wand and changes the name of this disease, when people ask what it is. And you mention liver disease, they will still ask you about alcohol or possibly drugs and you will still need to explain it to them.

[PBCRobert Partner in reply to EAJSWW]

One of the issues is that 85% of people with PBC *never* develop cirrhosis. And yet are blocked from things such as mortgages because they "have" cirrhosis.

These people need our help and support now. No, cirrhosis isn't a dirty word- it's just. 85% inaccurate in PBC.

[EAJSWW in reply to PBCRobert]

And cholangitis isnt accurate either.

What we need is proper education . Someone from all charities and organisation to be educating properly. If all these internationals are onboard then why not get everyone together and provide an international information website etc that everyone from doctors to charities and insurance and benefit people can access and get the samesame accurate info. That way everyone regardless of stage of pbc gets support. Unless when you become part of the '15%' you suddenly cease to matter.

[mollymom]

Happy to complete the survey. Please get Cirrohsis out of the name!!! People are ignorant. I don't even drink!!!! UGH and a big Thank you .It's about time!!!

[mollymom]

I have had to go so far as to tell people I have a Lupus type disease of the Liver. I'm tired of Dr's Nurses and people telling me to stop drinking!!! I don't drink and Never have !!! So sick of the ignorance....