Thank you for adding a further posting JenneryLayne.
I would not agree to using the C in PBC as cholangitis. I think this too can be a bit detrimental. To me the ending of 'itis' means something different as one can have tonsill-itis, laryng-itis, etc and they are usually temporary.
The word 'itis' being a suffix means 'inflammation' and that to me though in PBC we can have inflamed livers or ongoing inflammation it would come across as something that would still baffle the ordinary person. I'd never heard of PBC prior to several months before I was diagnosed back in 2010.
I have read somewhere that PBC is a cholestatic disease and that to me says more than cholangitis.
As someone who was there at the initial conversation with Bob Gish, I was interested in one or two of the, erm, "details" that were part of this post. I am a member of the PBCers digest and did have a wry smile as I read for myself the interesting take on this initative.
I don't care who gets credit for what, or the degree of factuality (made up combination of fact and actuality, for the record) that goes with it. I don't care if some patient organisations had to be convinced that this was the right thing for their members. I don't care if people want to take ownership of certain aspects or not. It belongs to all of us. The "We" is every single person affected by PBC: patients (as yet diagnosed or not), carers, family, friends, medics, pharma.
What I do care about is how people with PBC are affected on a day to day basis. This initiative is important because it has the potential to change peoples' lives: in very direct terms. So far, the Foundation has had almost 500 responses to the survey and that is increasing daily. The mandate is very clear. "We" are speaking in a very clear voice. It is a collective voice and a powerful one.
This survey isn't about us being associated with alcoholics, per se. This initiative is about addressing active discrimination that occurs. It is about taking away the tick box mentality that comes with the word cirrhosis. It is about righting a wrong with the description of a condition that is inaccurate for an enormous percentage of the people with that condition. It is about people with PBC not being frightened at the time of diagnosis unnecessarily.
I have been invited to address EASL in Milan at the end of May to put forward the patient organisations' viewpoints (and hence, the views of our members) and I intend to do that as strongly as I can. From there, we shall discuss it in Vegas and then, all going well, in Boston with AASLD. (The American equivalent of EASL) I shall be working with other patient orgs to ensure that what we say in Milan will be from a collective and not just the PBC Foundation's view. This is hugely important.
"Itis" itself alludes to inflammation. There is nothing temporary about PSC and they have itis in their condition name. PBC is said to be an inflammatory liver condition, amongst other things. You know... The new name might not be perfect but the chances are it's going to be one hell of a lot more accurate and less discrimination-inducing than Primary Biliary Cirrhosis.
The consensus is huge. It spans throughout Europe and America. I hope we can involve other organisations and make this a truly global movement. There are very very few people who don't see this as a good thing. But it will take focus, effort and time.
How wonderful this news is the name Change should have occurred a long time ago.
I was diagnosed many years the name itself was scary. Your correct their is a stigma with the term , I never have been a drinker and people quickly assumed the worst.
The conference is in Las Vegas during the last week in July. I am posting a blurb I just pulled from th PBCers Digest this morning and below is the information. I promise to take detailed notes and repost the info each day on this forum.
On behalf of the PBCers Organization,
our President, Linie Moore, and the Organizing Committee, I would like to
invite you to our 12th conference – 2014 PBCers
Organization Conference: Educate, Inspire & Achieve to be held in Las Vegas from July 28 through
30. If you choose to attend the conference you will learn that we
all face overwhelming challenges every day in learning about and living with
autoimmune liver disease. We come from all walks of life; we will have
traveled from far and wide. Many of us have never met. Yet we all
have something unique in common that motivates us to attend this patient
advocacy conference.
Education. As most of us have learned, anyone can post
information - good and bad - on the Internet. Here we get to listen and
connect with dedicated experts in the field of autoimmune disease, specifically
autoimmune liver disease. These leaders will share their knowledge and
expertise, speak with us on a personal level, and help us to understand how we
can live better, more productive lives. In addition to our pre-eminent
physicians, there will be specialists discussing autoimmune disease on other
levels. Our sponsors, a dentist, a nutritionist, a mind and body expert,
and a Social Security Administrator, among others, will help us to view our
health and bodies in new and different ways so that we can develop strong
coping skills and achieve good health. These special guests inspire us to
achieve a better quality of health and life, allowing us to share with and
inspire others to advocate for themselves.
Inspiration. This is a time of great hope for PBCers. There
are numerous clinical studies and trials taking place around the world with the
hope that there will be more pharmaceutical options to treat PBC and its
symptoms. There are new, non-invasive technologies in the United States
for studying the liver. Recently, there has been a worldwide call to
change the name of PBC so that the stigma of “cirrhosis” will no longer be the
face of our disease. As a result of these studies and movements, we can
face a future with less need for autoimmune liver disease transplants and
patients will live full and productive lives.
Achievement. It isn’t easy to plan a conference. The Organizing
Committee members work together from New York, Pennsylvania, Texas, California
and Oregon. We don’t get to meet over lunch to strategize and discuss all
the components to create this well-oiled machine. We count on the
membership, family and friends for donations, all of which go to research and
education. Our auctioneer, Janice, will use all of her persuasive powers
to encourage you to purchase items during the auctions. Visit Carol at
the crafters’ table and buy a gift for a family member or friend. Look
for the organizers, Sandra, Sharon, Jeannette, Jeanine, Linda, Cathy, Buck, and
me, and please say hello. Attend our exciting and interesting breakout
sessions so that you can connect with people you may have met through the
PBCers Digest or our Chat Room. There you can ask the questions that
never seem to get answered. Friendships made at the conference are
forever. Through your participation and involvement, we can all achieve
our personal and collective goals, and make the 2014 conference the most
successful yet!
I hope you will consider making the
trip to Las Vegas. We will welcome you with open arms. It's going to be an
exciting three days filled with Education, Inspiration, and Achievement.
How is the process of having the name change moving forward. I read your post and would like to hear about the progress. Also, when or what website is for pbc'ers located in the USA . Are their support groups?
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Maybe NOT PBC......perhaps Nodular Regenerative Hyperplasia?
Bit of an epic for which I apologise.
Raising Awareness for Primary Biliary Cirrhosis
MITOCHONDRIAL AB, M2 ELEVATED
