Lack of support for PBC cirhossis....and venting feelings.

[bobbycat]

I have a friend who has cancer but luckily is doing very well and all seems fine. All through her illness there was so much support from Macmillan Nurses, Oncology department, GP and all her questions answered with time spent onnher but with PBC cirrhosis the support you get is minimal. The site here is such a help of course but wouldn't it be good if our illness was more acknowledged. I have PBC Stage 4 cirrhosis, a heavy bleed from varices, and not the longest of life span now with a pretty difficult and unpleasant time to come but there are few people in the medical field or even media who pay attention to us. in fact it is rarely mentioned and if it is it is usually related to alcohol. Whoever we are and for whatever reason we might have got cirhossis, there should be more acknowledgement and understanding of the disease

Perhaps one day someone will do a documentary on it, after all many medical,programmes and media coverage have included heart problems, cancer, kidney disease, obesity, lung disease..seen and read most of them but the good old liver...where is that mentioned? usually under the breath as if it is an embarrassment.

[kimphoebe]

Hi bobbycat

I agree it is very little about chirrosis in the media. To be honest if people ask me about Pbc i tent to avoid the subject because if you mention chirrosis they look at you as if you have killed someone very embarrassing. So I v learned now say nothing is best.

[Hidden in reply to kimphoebe]

I say that I have a autoimmune disease that's causing my immune system to attack my liver and bile ducts. I take medication to try and slow it down and hopefully it will

[marty102 in reply to Hidden]

Jennyhadenough

That's almost word for word what I say.

[bobbycat in reply to Hidden]

Hi..yes I do too but I also say cirrhosis. it is the lack of attention to this illness that makes me feel more should be done via medical programmes, press etc....if someone has cirhossis through drink, that is also an illness ...but the whole subject seems taboo and it shouldn't be! Some cancers are also formed by misabuse of drugs and substances but the people receive the same attention as a 'normal' cancer patient.

As you can see I get annoyed by it all and probably will take it further!

Take care

[Hidden in reply to bobbycat]

Well right now in America drug over dosing in public and in cars with kids is getting all the attention

We have to care about each other

I was treated awful at a imaging facility because of what my Dr was testing for.

[Triciawc in reply to Hidden]

Pretty much what I say...

[iagra]

Sadly, it doesn't help the condition, but, it'll help you with the identity of the disorder. Whenever I say that I have PBC - I use the new name: Primary Biliary Cholangitis. Please, read the following from the American Liver Foundation (liverfoundation.org/aboutth...

"Primary Biliary Cholangitis (PBC, previously Primary Biliary Cirrhosis)

Health officials from around the world have overwhelmingly supported changing the name of Primary Biliary Cirrhosis to Primary Biliary Cholangitis. Since cirrhosis occurs only in the late stage, the name primary biliary cirrhosis is actually a misnomer for patients in the earlier stages of the illness. Changing the name to primary biliary cholangitis will better serve patients and the medical community worldwide. Visit this section to learn more about PBC, including a description of the disease and how it's diagnosed."

Most people don't anything about PBC. If you don't tell them you have liver cirrhosis, they will never associate PBC with it.

[Ohio82 in reply to iagra]

How do you phenetically say the new last name ? So have never heard anyone say the new name and I stumble with it for that reason.

Just having a liver disease itsekf - makes everyone think you drink - which I don't and never did to any degree.

Our disease is so uncommon that the medical field also is not well versed in our disease.

[iagra in reply to Ohio82]

cholangitis

noun chol·an·gi·tis \ˌkō-ˌlan-ˈjīt-əs\

You can hear the pronunciation at the link below. Click the small red speaker icon next to the word, for audio. It's not hard to say.

merriam-webster.com/medical...

[Rockie]

I agree with you

[emerich]

I've said,to the few people outside my family that I've told, I have pbc, it's an auto immune liver disease. Nobody has asked me what the letters stand for, Just how I am and how I'm affected. If it was me being told about it I don't think I would ask what the letters stand for either. I'd probably say what is it? but wouldn't be expecting to be told what the letters stand for. This has never been a problem for me.

[bobbycat in reply to emerich]

Hi.. I also say cirrhosis. it is the lack of attention to this illness that makes me feel more should be done via medical programmes, press etc....if someone has cirhossis through drink, that is also an illness ...but the whole subject seems taboo and it shouldn't be! Some cancers are also formed by misabuse of drugs and substances but the people receive the same attention as a 'normal' cancer patient.As you can see I get annoyed by it all and probably will take it further!

Take care

[Ohio82 in reply to emerich]

Most people don't get it at all. The best we can hope for is that our family does and maybe a few close friends.

[emerich]

Hi Bobbycat,

I agree with you there's a lack of coverage of pbc. I think this is partly due to the rareness of the disease. To be honest when gp told me the name ( cirhossis then, not cholangitis) I didn't consider the alcohol connection others might make. When I joined here and mentioned to my husband that a lot of people think cirrhosis is caused only by alcohol, I was surprised when he said "that's what I thought " Obviously he knows I rarely drink alcohol, never now, but it was his first thought.

It would be good to have a documentary on pbc, but as it's so rare they probably don't think there's enough interest for their ratings. I think a documentary on cirrhosis might end up concentrating more on alcohol as the cause (as it's one of the better known causes) and side line other causes like ours.

[bobbycat]

Yes you could be right....however some info for the public about end stage liver and transplant could show cirhossis in a new light considering many people who have never drunk get transplants now days. I think what brought this to light was the overwhelming kindess and care my friend has had for cancer...all questions answered instead of net searching, and often getting wrong info..which is not surprising as we mostly have no real information, an instance is that I was prescribed anti inflammatory pills for back pain by a senior nurse at the surgery and this contributed to my varise bleed apparently as it was out if the blue as I only had a grade 1 varise... I am no longer allowed to have them ever.

[emerich in reply to bobbycat]

I knew we were not supposed to take anti inflamatories but I didn't realise they were so risky. I have taken the odd few as they work better than paracetamol when I have facial neuralgia. Not any more. Thanks for the info. So shocking for you to have that happen.Hope you're keeping well now.

Take care.

[bobbycat]

Yes not too bad, thank you. Btw I have facial neuralgia sometimes.,,very painful and I am allowed a small amount of codeine for this. All the best

[cfsummerford72]

Yesterday to prive a point on my FB feed. I asked "if I asked any of you what PBC was how many would?" I only had two people to respond. And their responseinfuriated me. They both commented "public broadcasting company,lol" it infuriated me bc as stated eariler theres always google. When I put the definition in the comments still no one responded. I completely understand your vent. Unless this disease effects you youre oblivious that it even exist. We I told people I have Liver disease the first thing they said was "have you been drinking that much?" I respond with a quick no more than you have. Truth is I havent touched a drink from fear that it would trigger my body to double iver in abdominal pain.