Would you tell the newspapers your story about PBC?

Hi all,

How many of you live in greater Manchester? If you could would you tell the paper within your area your story about PBC? I am asking because I sell advertising into press, a few years ago I asked them to run a story on PBC which they said they would however I had to give my story. At the time I didn't want everyone to know my business, however now I'm thinking should I just do it? As it will give awearness to PBC.

Would you give your story to the press?

24 Replies

  • My first initial thought is a definite no. Thinking about it a bit more I am still adamant I wouldn't.

    Some of my closer friends do not even know that I have PBC.

    I think what would perhaps change my mind would be if the medical profession did take note exactly what PBC is . At the practice for eg that I am with, the two nurses I have seen for bloods are so ignorant of it. If they knew what PBC stood for then they'd more than likely not have me having to get into a debate regards what bloods they are supposed to be taking (as the last 2 occasions I have had to return for the missed ones!).

  • Hi peridot you have just said what i was thinking,my GP says i am the only one with PBC that he know's,so what chance have you got with any one else understanding what we have to live with.The only people i can turn to is my Consultant and my friend's on here.Take Care

  • I am glad to read that your GP informed you that he only knows of you with PBC. I did enquire at my own GP surgery and said that I only wanted to know if there were any other patients at the surgery with PBC and no more. I got a definite no as in they cannot divulge any such information, all that patient confidentiality yet when I saw the GP 12mths ago in surgery and he wasn't impressed with me as I had taken it up once again with regards to the blood results, one of the receptionists was talking about me over the phone (internally) whilst I was sat waiting to go for repeat bloods with the nurse (after I heard another patient at the open reception desk saying she wasn't going to hang about for the next 15mins for the nurse appt so I asked if I could have it). The receptionist was discussing me over the phone, I presume the GP given what one-sided part I heard as he distinctively said (I'd) just taken up a nurse appointment that was available.

    The reason I asked the surgery if there were anymore patients on their register with PBC was because I could probably have gone to see the GP that he/she/they were seeing and the care received might have been better.

    Just hoping that in the next few days when I change GP surgeries I do not get all the run-around once again with regards to blood test result print-outs that I have had at the current surgery.

  • OMG (oh my God) Periodot...I just had a horrible experience yesterday with my gastro Dr. Not only could he not answer any of my questions, he rushes my husband & I out, after only 10 min., when we had waited to see him for 1 hour & 20 min.! I asked if they could give my phone # out to his other 6 PBC patients, in case they would like to contact me & I was told no, due to privacy act. I was crying when I left, I was SO frustrated/angry with this wasted visit. Needless to say I need to find another gastro dr., but who's to say it will be any better? I feel SO defeated/exhausted. The nearest hepatologist is 3 hrs. away. :(

  • This is one reason that I asked the gastro to discharge me back to the GP in Oct 2011 after seeing him over 12mths in 3 visits to outpatients.

    I only had 10 min appts tops all 3 times. The first visit I ever had as a new patient I left feeling I had suddenly aged drastically! My husband had expressed his wish I quit a very demanding full-time managerial (retail, small shop) job later in 2011 which was just prior to my first hospital appt. After much debating about me finishing, the pros and cons, I did quit. I have never regretted leaving this job but regretted leaving the one I had before, wished I had of stayed but some things you never know until you do....

    The gastro had written me off as 'retired' and also seemed surprised I was still having periods every month. I was only 46 at the time. I felt he was really insulting and yes, like yourself I had awhile to wait for my appt too plus shipped here, there and everywhere whilst there (bloods different area, weigh-in, etc).

    My 2nd visit I nearly walked out before I even got to see the gastro as I heard his voice shouting of me down from a corridor and when I walked through a closed door into a corridor had no idea which room he had disappeared back into! It was this visit I came home and decided before returning in the 6 months time that I had negotiated with him to have I wasn't going to be returning unless very necessary so discussed on my 3rd visit of discharge.

    Can't say that discharge back to the GP has been that successful. My GP decided Feb 2012 to repeat bloods in 3mths due to a slight rise on the repeats and I had been going every 3mths but then last time I saw him, when I asked when I should go back after we had had a bit of debate in surgery over the print out of the bloods (he can't see why I want to look at them!), he just told me 'to choose' when I go back! Now that to me does not sound very professional. The hospital gastro on my discharge (that he deemed 'temporary' as said if needs be in future would be referred back) did write in his letter to the GP to do the bloods every 6mths. Back then my bloods were higher than they have been since.

    I don't think there is any other gastro at the hospital where I have been going. This particular one does actually lecture other GPs on PBC as he informed me on my last visit and I know when I originally got the letter thru to see him, he does outpatients at various hospitals so went to nearest hospital, although local, on foot it takes me hr and half to walk to.

  • So sorry to hear this. We pin so much hope on seeing specialists and feel so let down if we feel our appointments are a waste of time.

    I can totally understand you asking about others in your area that have the PBC, its a relief to talk to people who know. If you are in the uk the pbc foundation can put you in touch with others in your area and in the bear facts mag there are groups in lots of areas. If you are in the USA I know there are groups there that meet up aswell.

  • Yes, zipity, I have reserached on internet & the closet group for me is 8 hours drive away! There are not as many cases of PBC in the U.S. versus U.K. If given the opportunity I would definitely reveal to the news media exactly how PBC patients are treated. I just got off the phone to find out resutls of my blood test yesterday. When I asked the nurse when should I have my next one, she asked me, "Just WHO told you that you even need blood test?" She is clueless, of course. Only reason I asked her is because my gastro Dr. yesterday never told me when to get the next ALP count, & I had asked him. Later,he walked out of the room & never came back! My husband & I sat there waiting about 10 min. & then left. He had already gone to the next room to see the next patient! So rude & could care less. He is one of those doctors who went into this profession for the money, & lacks genuine interest in his patients. Patients are seen every 10 mins....herded in & out like cattle, so he can pay for his yacht, Jaguar & Porshe, etc.

  • This has been my issue, there is only a few people that knows I have PBC and I am very private. This is why I haven't already done it. I just think we need to bring awearness to PBC. They do need real story of people suffering from the condition, this is why I am asking would anyone want to tell there story? Or is it just best not to do anything.

  • Another issue would be what was down to PBC and what was due to something else as many of us have other illnesses aswell as the PBC and so dont really know what to put down to what.

    Perhaps the foundation could do a piece for the paper to raise awareness?

  • I feel strongly that we, the sufferes, do need to tell our story, to raise awareness, as the ignorance is woeful. However, i'm not sure how best this can be done and totally appreciate people's need for privacy esp where they are't 'out' to family and friends.

    I think in talking to journos (and I have done this in the past, not related to liver disease though) you need a clear plan of what you want to achieve/ a few clear points you want to make, what you don't want to say (esp if risk of it being misconstrued and turned against you) . You do have to tackle it cvery carefully IMO but it can be done and usefully. And - side issue here - med students - they can be a receptive crowd, like little sponges in a sense, and of course the medical ppl of the future - I have talked to them too, as part of their training, in connection with health problems of my son who has a different 'weird' syndrome.

  • Yes no question, when i got this first i use to take my tbs nerley under the table so as noone could see me, not i couldnt care less also didnt want anyone that wasnt family or close friends to know, now i tell the world, mainelly because 99% of the time i look grand, and if i say im tired or feeling unwell people dont get it, so the more people understand the better.

  • Folks just do not get the fact that at times most of us feel very fatigued. I am fortunate now that I don't actually suffer from that but there's never knowing if I will as before diagnose I suffered badly with it but I think that was a combination of both work and the PBC surfacing.

    I don't sleep very well at night these days if I'm on a bad itch night so start flagging mid-afternoon. Yes I do look pretty much tip-top condition on the outside and currently I'm not debilitated with PBC but at times I feel annoyed with my family. They don't think when I'm saying I feel tired due to a sleepless night and don't want to do something for them I mean it, tend to get the reply as sure a lot of you do, "We all feel tired at times".

    I also don't take my 2 tablets in front of anyone but my husband (he usually remembers to get me the evening meal one). My family wouldn't bat an eyelid as they know I'm on tablets for PBC (even if they think that is the solution), I know friends would probably ask me what I was taking and why and I am not ready to say as yet.

  • Hi there everyone I am quite saddened to read these posts we should shout from the rooftops about this illness and autoimmune problems in general we should never be ashamed non of this is our faults by hiding it sort of makes us like like we had a role to play in getting these awful problems I say don't be ashamed get it out there it's the only way to raise awareness of pbc and the worry fear and the affect it has on our lives I myself have told everyone about my pbc I have only ever had one comment about the cirrhosis being caused by alcohol I soon put that person right and she was surprised to learn that there where other reasons for liver problems some people are just to dim to take it no matter how you explain but that's there problem not yours pbc needs to be spoken about stay well everyone x

  • I strongly agree Wendom!

  • Hi everyone I am sorry to hear that you don't have a good gastro.I live in New York City,I have a amazing and caring doctor.I have known him since 2007 and every time when I have appointment He takes time to explain me everything,even if I see him in the hospital.Last time I went with my husband we were 3 hours with him.

    I hope the best for all of you.

  • Having PBC is nothing to be ashamed off, its not a stigma, its an autoimmune disease and the more people who know about including doctors the more seriously it will be taken and the more research can be done about it. I have been on national radio and in the national papers because I wanted everyone to know about it. After these bits of media coverage the calls to the PBC Foundation increased because other sufferers realised they were not alone.

    So personally I shout about to everyone and make it very clear that not every liver disease is related to alcohol.

    Be forthright with your doctors and don't let them walk all over you - they are not gods and they are in business because of us! tell them how you feel and what you want from them, remembering that they can't cure you but they can give you respect and encouragement to make the best of living with PBC.

  • For me it is the fact I am ashamed that I have got something wrong with me.

    Prior to 2010 I thought I was in tip-top condition, my life had just started to come back together finally after remarriage as I was a widow for 16yrs raising my 2 children. My second husband and I had only met up at the end of 2008 and then getting married in 2009. We'd not been married a year when I started with the itch.

    Life has been that bit more difficult since diagnose of PBC end 2010 and we are slowly 'getting there' as in accepting this is a long-term condition.

    I was always the strong one in the family, had always been there for my brother's and sister's problems over the years (our parents died long ago) and suddenly I have PBC. It is pride that keeps me from rambling about PBC. We just get on with it as I do not want it dominating my life. Almost every day I remember that I have it and it is at night when I wonder if I am going to have a good night or not due to the itch rearing its head then.

    The one thing as you have stated here LIndaRose is exactly how I would like PBC to be perceived. I'm not expecting people I know and even strangers to know exactly what PBC stands for or really understand it, it is that stigma of it possibly being mistrued to alcohol.

    Last year I emailed the British Liver Trust after the published an article online from some Health Organisation as it simply did not state anywhere that certain liver conditions are not alcohol related. It did go on about alcohol. The reply from the Trust was that it wasn't their comments which were true but anyone with no liver problem could get the wrong end of the stick. I think that is what needs putting across first of all.

    Liked the comment about the doctors and them not walking all over us. I have just gone to register with another GP surgery recently and though I don't fancy having to go in to have the urso put on a repeat script at that surgery, I'm hoping it will be a better experience than the GP surgery I have been with as in a nutshell don't think the GP I seemed to get all the time has a clue about PBC.

  • Thank you so much everyone for your replays, I am still unsure what to do. With me working for the company I hope the editors would be kind but who knows.

    I was very surprised when I joined this website just how many people are suffering with PBC in my area, and I bet there is more who don't know about this site.

    I'm not sure if it would help to inform people about PBC but is it not worth a go?

    A few years ago when I wanted to bring awareness to PBC, the foundation sent me lots of information, however the editor wanted suffores within the areas, at the time me working for the company and being a private Pearson and just wasn't ready.

    I might not work for the company in a few years, and I will then probably kick myself for not doing anything.

    Would any of you be interested in writing in your story about how you was diagnosed, and how you have been treated since?

    This is just a idea it may not work, but if get a few interested, then it will push me to do it as well, no pressure.

    Take care all xx

  • Hi fudger126. Just been reading all these messages. I am on the south coast uk and have bedn thinking about trying to raise more awareness of pbc so yes I would definately be up to let paoer have my story.. I was only diagnosed in feb this year and have realise more awareness and resesrch and fund raising need to be done if not to help us but definately to help people in the future. Please contaft me would love to help. Xx

  • Hi, A few years ago I let our local paper do an interview with me for a Health page they did weekly. I wanted it to be informative and positive and the journalist who interviewed me also took one of the PBC foundation leaflets. The article was very well done and I was pleased that I had done it. My feeling at the time was if it helps someone else who has it or someone who might be diagnosed because of it then its a good thing.

  • Do you still have the article by any chance?

    Wondering if so if possible to pop on this site? Be interesting to read.

  • I know I am a bit late coming to this discussion but I wanted to say that, given the opportunity, I would talk to anyone! I would talk to the devil himself!

    I know how you feel Peridot about being 'ashamed' - with me it is more that I am sometimes a bit angry with myself because I am not used to being limited by my stupid liver. Usually those feelings pass and I get angry with medical science for not even being able to agree on what PBC does and how it should be managed/ treated.

    The illness that we have is like all other autoimmune diseases - we didn't 'ask for it', we've done nothing to make it happen to us and it is nothing that we should be ashamed of. Not one of us would ever dream of saying that another disabled or ill person should be hidden away or embarrassed because they are ill. We have nothing to be ashamed or embarrassed about. The only people who should be ashamed or embarrassed are those medics and others who don't bother to find out what it is we need.

    I think that the only way that public awareness of PBC will grow is if we put it on the agenda ourselves. It;s important that the people around us know what PBC is and it's equally important that health care professionals are made aware that PBC is out there and that some of their patients will have it. We also need people from government departments like DWP to be more aware of the effects of PBC on our lives. And to some extent, it's important that we all find a way of getting the information out.

    HOWEVER... because PBC is such an individual disease - we don't all experience it the same way, I think it's really important that we only do media stuff with the support and assistance of an organisation like the PBC Foundation. They can help us get the right message out there and make sure that we are not inadvertently putting out the wrong information.

  • well said SC49 ...its vital the message is clearly conveyed first up with individual experiences in behind in the story

    PBC is an illness with a shocking upfront diagnosis which fizzles out to individual daily symptoms of less or more depending on the individual . I was told I wouldnt make old bones 7 years ago and am still here feeling slightly foolish with it all as I am basically well.Its an invisible illness in many respects to others. Thats what makes it difficult for us -always the fear of whats around the corner...its hard for families beause they see basic wellness and hard for us because we dread what could be. This obsession for "bloods" is interesting. I was told to have tests every three months but I dont. If I feel concerned I go to the lab as I have a repeat test form there ..I dont go to the surgery and I follow it up with a drs appoinment - we are talking NZ so the system is not the same...im not sure what they can do if it starts to rise....

    Anyway clearly I am lucky as I can do my test today and see the dr 2 days later for results.

  • I had an article in our local paper as I am in Australia and wanted to see if there were others with PBC to form a support group. I did not get any response from the article but a year or so later I met another lady with PBC so we formed a PBC support group and started to write to newspapers and magazines and through that we got a lot of response. We had the first PBC meeting at my house and after that at hospitals where we had speakers talk about PBC and also about liver transplants.

    We used to send out newsletters every 3 months, I had to leave the group because of health and personal problems and the group folded a year or two later so the only Aussie support in on Facebook.

    So my answer is Yes I would let the newspaper do a story to highlight PBC and you never know maybe another PBCer could be living around the corner from you.

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