Raising Awareness for Primary Biliary Cirrhosis

[sbouloubassis]

I would like to thank all of you for your blog's. Reading your blog's have helped me with a lot of my own symptoms. I just wanted to let you know that I feel awareness is very much needed for PBC. Most people have never heard of Primary Biliary Cirrhosis and as soon as they hear the word Cirrhosis they think differently of you. Oh I had no clue you were a drinker, did drug's, had many sexual partners etc. What is really sad is that I have found many people in the medical field that don't have a clue what PBC is. Well, I wanna try to change all that! I have a great friend that has a friend that runs very successful fund raiser's and he has agreed to help do a fund raiser for Awareness for PBC. We don't have a date set in stone yet but we're looking to do this in Sept/Oct 2013. Once I start to advertise I will keep you up date through blog. Wish me luck! May God Bless all of you and help the researchers to find a cure soon,

[LindaRose]

I don't tell people I have PBC, I tell them I have autoimmune liver disease, if they ask me which one , then I tell them, followed by a very quick, non alcohol related....

[wendyh]

get in touch with the foundation and they will probably be able to help with the fund raising by sending you leaflets and banners etc.

[sbouloubassis in reply to wendyh]

Thank you, I called the one in NY and am waiting on a call back.

[Hidden]

I don't tell my friends locally and strangers or distant family members that I have PBC.

I find it has been a bit tedious at times just saying to a practice nurse I have PBC. One at the old practice I left in April, she didn't ask me once but 3 times in a 12mths period when I went for bloods did I ever drink and how much on one occasion!

What I normally say to people if I have to is I have PBC and when they want further information, I simply say that my bile ducts are slowly being damaged due to my system making antibodies that do this and it can damage the liver. If anything further is mentioned, I give examples of other auto-immunes like MS and lupus. I think MS seems to be the one condition that tends to be pretty familiar with people despite a lot not knowing exactly what it actually is.

I think the biggest awareness of PBC will one day come when one of the 'famous ones' as in someone who is a big celeb or film star is struck down with it that will throw it into the spotlight but meanwhile, most of us just have to get on in our 'secret club'.

[Oidra]

As I am one of the "lucky" ones that have PBC with only a few symptoms I tell everyone I can that I have PBC. I explain what it is, how there is no known cause and laugh as I say that some ignorant people assume it is caused by heavy drinking-even nurses in hospital! I tell of the effect it has on people`s lives when they have fatigue and itching and how I count my blessings that I have so far escaped this. It is amazing that so many in the medical profession do not know what PBC is, even having a blood test or a scan I have had to explain to the nurse what PBC is. So the more people we tell, the more people will be aware.

[Hidden]

I don't tell anyone anymore as when i did I soon found myself without any friends even one who drinks like a fish has deserted me, the only friends i now have left are all on line ones, most of them are sellers on ebid.net and the other one who I now regard as the best friend I have is in Holland they all know what is wrong with me but also have the brains to have looked on the net, normal ( real life ) people just think Oh yes Drinker and have walked away. I have said all along that we won't be recognized till a celeb gets it but they are not likely to say they have it are they as they will get treated like us and loose celeb status or wreck their careers through ignorant people.

[Annflanagan]

best of luck, when i was dxt first my doctor rang my sister and said i idnt know ann was a drinker,i was livid, needless to say hes not my doctor any more, raising awrenness is a good thing hope it all goes well

[sbouloubassis in reply to Annflanagan]

I so sorry that happen to you Ann. That doctor should lose his license. I pray that you are in the hands of a good caring doctor now.

[Annflanagan in reply to sbouloubassis]

i am now thanks

[JennerLayne]

I am recently diagnosed, live in the US and to date, have told only my sister and husband, but neither have jumped into taking the next step to read more online and really understand PBC. It pains me that they don't feel the 'urgency' as I do. They see me as I am today --- still somewhat vibrant and healthy looking, and so the idea of ME having a devastating disease just doesn't fit with what I shared with them. Afterall, who wants to picture their spouse or only sister suffering from an uncommon progressive disease?

I've experienced a lot of emotions about sharing simply due to the title using the word 'cirrhosis' and feel that yes, I may be alienated, but once I learn more about myself and where I am in this process (my biopsy was 'sketchy' and not staged, but pointed to PBC/AIH) I may be much more open to talking about it with others.

I think back to the 60's and 70's when women had breast cancer and everyone was secretive, because the mention of breasts was personal and almost taboo. But because a few women had the strength to talk about their illness, more and more people have emerged over the decades and today (at least in the US), breasts, pink ribbons, outward support, marches, fundraisers have all become open and there is a show of support from families, co-workers and even large corporations.

I realize the number of women (and men) who have breast cancer far outweighs those of us with PBC, but why keep it on the downlow? Yes, there are people in situations who may have family members and friends who'll back away, or may not wish their employer to know because of the possibility of being let go (I'm one of them since I work on short term contracts) --- but, on the flipside, will PBC ever be outted if we who are kin to it don't talk about it?

[sbouloubassis in reply to JennerLayne]

Your words are just how I feel. I have had PBC for 17 years, now at the end of stage 3 and am starting to get very sick. I have only told my husband, children and best friend. My best friend is my rock thank God for her, my husband had the attitude don't talk or think about it and its not really happening until a few months ago when I had my last biopsy (which him and my bff were both by my side) and the doctor told us just how serious my PBC has become. My children still see me as super-mom. Aside from the weight loss ( I'm 5ft and down to 86 lbs.) I don't appear to have anything wrong. I truly believe that until we have awareness like they do for breast cancer, heart disease etc. nothing will change! Please join me in praying that this bull roast will be the beginning of getting the word out there. God Bless you.

[Hidden in reply to JennerLayne]

Hello again.

You could always refer to PBC as the original terminology..I once read it was known as at some point in time (don't know exactly when it change to ending in cirrhosis).

I cannot find now where I did see it once but it ended in the word cholestatis so why not say Primary Biliary Cholestatis. After all most people haven't a clue anyway. I just say to who I have to (ie nurses who are ignorant for one) PBC and when I have to continue go into the blurb about me making certain antibodies that attack my bile ducts that in turn can irritate and inflame my liver.

I think that because I pop a pill every day now with having PBC my family seem to think that that is the answer to it all. They do not realise that at some point in the future it MAY become pretty life threatening but I'm not going to go there as hoping I never need to. But you'd think that saying to someone there is no cure it would perhaps raise some question unless they prefer to switch off as sometimes not knowing......that familiar saying which I have to agree with myself over certain things.

[SC49]

I tell everyone who asks! I tell them the full story and bore the pants off them with an explanation.

My 'speech' is: 'I have primary biliary cirrhosis, its not as bad as it sounds. It means that the bile ducts don't work properly and if i don't take the tablets, it means that I might get cirrhosis. it's autoimmune and not anything that I have done. If I had known that I was going to get a liver disease I would have partied like there was no tomorrow while i had the chance. It's treatable but not curable. My symptoms are that I get very very tired and foggy headed and sometimes I get some pains round my body that I can't explain away.'

Most people who I care about have been great - they ask the right questions and offer just the right amount of sympathy. Anyone else I'm not really bothered what they think.

My employer isnt too helpful and my consultant doesnt really take the symptoms too seriously which is a pain in the bum but eventually (when I can stay awake long enough and my head is in gear again, I will fight it out with them.

Good luck with your fund raiser x

[cazz22]

i feel that not enough awareness is going on for pbc.ive written a letter to miriam stoppard at daily mirror to try to do a piece in national newspaper.seeing lots of adverts for very worth causes on tv and papers at mo but nothing on pbc to the point as you all say we are having to explain to everyone.just read canada report on urso and they say pbc is very common! wonder how many people dont know they have it in this country.lets sing out loud!!!!

[Hidden in reply to cazz22]

From a personal point of view, yes it would be good if PBC was to be heard of and more exposed but I still think that for some of us we'd rather just try to get on with life without it being known that we have PBC.

I myself wouldn't want everyone to know I had this as I'm one of these people who prefer to have a quiet life, get on. For me everyone around me knowing I had PBC it might just mean being given undue attention and fuss which I do not want.

I think the turning point for me would be to one day know someone as in local who speaks the terminology to me who has it or a relative maybe and then I would more than likely 'own up' to having this.

[sbouloubassis in reply to Hidden]

I totally understand your not wanting anyone to know Peridot, I myself have felt that way for the last 17 years. I just feel that so much money is given to other diseases because of awareness. I also feel that a person with PBC should not have to defend their-selves. These are my feeling's . Even if awareness does happen it is still your decision if you want to keep it to yourself but at least you won't have to explain it when you have to go to a lab for testing. God Bless.

[Hidden in reply to sbouloubassis]

In April I switched GP practices and got called in when the repeat bloods were done being a new patient at this surgery.

The GP I saw first time with pre-PBC diagnose and after being female. She was quite young but at least she didn't make me want to defend myself. Though she did seem to quote what it says on the NHS site (patient.co.uk - I did read that info quite some time ago, not the best!) she did say that it's not my fault I have PBC, it is auto-immune, it's not understood nor it's not yet known how we come about it. She did seem to be sympathetic and didn't seem to mind when I said that I probably know more about PBC these days than she does!

I came away rather satisfied that it will now be another 6 months before I return to the practice for bloods and to see her at urso review.

[Puddles]

I couldn't agree more that there is not enough awareness of PBC out there. I went to a GP I don't normally go to for a Hep A booster vaccination yesterday and I told him I was having it because I had an autoimmune liver condition (not wanting to go through the usual scenario after mentioning cirrhosis). He said to me - is it PBC - I said yes and he actually had 3 patients with it some of whom he had diagnosed! I was astounded to say the least. The truth is that he is very much the exception and already I have got used to medical professionals having little or no understanding of PBC, I was so surprised when he knew what I was talking about. It is sad that it has become the expectation of many of us that few people will know what PBC is or means. So many other illnesses have massive community support because people can identify with them and have heard lots about them. PBC can be very isolating because it is so rare anyway, and to most it is an unknown condition. I wish you the best of luck Sbouloubassis in your fundraising and getting more real information out there!

[Hidden in reply to Puddles]

Out of interest Puddles how did you get on with the Hep A booster? Asking because about 7yrs ago now I had Hep vaccinations when in a job that was working in a medical environment (domestic).

I've found myself wondering ever since as tho' at the time the 3 spaced out vaccinations I had (followed by a blood test to check if needed another repeat which I did), I had no problems, side-effects, etc., think it got me thinking due to Hepatitis being liver related.

[Puddles in reply to Hidden]

Hi Peridot, that sounds like the hepatitis B vaccination, I had those too years ago. All was fine with the Hep A, just have to go have the blood test to check for immunity in a few weeks. My specialist said I should make sure I was vaccinated for both as it protects against further insult to the liver from hepatitis viruses.

[Hidden in reply to Puddles]

I had 2 different hep vaccinations all those years ago (had I still been at that job I'd now have to have the booster apparently as was stated 'in 5yrs time'). I did have the blood checks afterwards, mine required a further jab and then another blood check followed by another jab. The 3rd blood check came back fine. The nurse (had the vaccines in my place of work as it was a medical centre) went through the results after the final blood check and said that my body was now making enough antibodies you see. Obviously at the time I was perfectly well.

I'm dubious as to whether this was some sort of trigger for PBC due to the timing or just a coincidence.

Unless you are going on holiday overseas from UK where I am it seems only then are things like Hepatitis vaccines offered but I'm not 100% sure if was mentioned I'd have now. My views on vaccines changed a long time ago after my daughter who is now grown-up was got with the MMR vaccine not being long out when I took my son for what was then the new MMR. My daughter seemed ok after the original measles but following the MMR a week later she looked like she had mumps with a distorted face and she was in pain on all her joints which at the time was thought to be arthritis. She recovered after about a week but I got stone-walled when I mentioned to an hospital doctor she had had the MMR only a week previously and could it be some side-effect.

Back then as I think now you don't get the leaflet when you have the vaccinations but I have seen one and apparently what my daughter had was one of the less common side-effects of the vaccination. My son was fine but it did get me thinking.

[sbouloubassis in reply to Puddles]

I think I would keep that doctor Puddles Thank you for your support and may God Bless you

[dislocated1 in reply to Puddles]

Wish I could find a doctor like that

[trixie711]

I just found your post. I have PBC and yes, people think differently of you but I try to educate them. I had a liver transplant in October 1998 at University of Chicago. I am now needing another liver and a kidney due to so many dieuretics. I am on dialysis every other day and its grueling. I am praying I get my transplants soon. Thank you all for your honesty. Just educate people, I feel thats my calling now.

[Ballymahon2]

I say i have an autoimmune condition that affects liver called pbc i dont elaborate