PBC Foundation
6,295 members5,567 posts

feel down today

bad day emotionally.everything seems to be going pear shaped in my life at mo.usually have good health to pull back on but not any more.is there any/ much research going on for pbc at mo.recently been asked to donate to several very worthwhile health causes but no one ever mentions pbc or liver for that matter.sorry for my gripe.no one else to moan to.

4 Replies

Sorry to hear you are having such a down day. There's no need to apologise, we all have a bad day every now and again so we all deserve the odd moan. But try and be positive, easier said than done I know but having PBC doesn't mean you have a death sentence. My consultant told me that with a few life style changes there is no reason why you shouldn't go on to lead as normal and as long a life as the next person. I read previously on this site of a lady who was diagnosed in her early 50's and was now in her 80's. So as mentioned in your description you may very well follow the other members of your family and survive well into the three figures yourself.

You ask if there is any research going on into PBC, there is one at present but the name escapes me but I am sure if you ring the PBC foundation in Scotland they will be able to fill in the details. It's a genetics study which requires volunteers to fill out a questionnaire and provide a sample of saliva. I choose to take part as I believe that if providing a sample of my saliva could possibly help in some way to discover more about PBC then it's a very small ask.

I hope I have been able to help in some way. So chin up, tomorrows another day.

Big hug sent your way.

Best wishes



Check out the Liver North newsletter, the latest one (should be a new one out shortly) - link below - there are mentions of clinical trials in those.

You can also click on the British Liver Trust website, there is a link on the with regards to clinical trials also.

Or if you look on NHS Direct website, there is also links for clinical trials that are currently recruiting, taking place.




thanks to you both.was on a complete downer yesterday.feel better this morn.thanks mumofthree ive volunteered for a trial at my hospital(doncaster) for a similer sounding thing.wonder if results will be pooled nationally.will also check out those links too peridot.


Thanx to Mumofthree & Peridot for a note of cheer. Like Cazz, I too have had an extremely emotional day of depression,today, from reading too much PBC info, online & thinking about the unknown future. It's really scary stuff. I also have had MS for 27 yrs., but have only had 2 attacks. I remember feeling the same way I do now, after my MS diagnosis, however, I am doing well with remission lasting 14 yrs. So, I hope, pray, & wonder if I will be as fortunate with PBC, which seems to be somewhat on the "back burner," of research, comparatively speaking.


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