Julia
I was dx PBC March 2000 at first like so many people faced with an incurable disease I was devastated. I live on a small island in the middle of the Irish Sea...the Isle of Man home to the TT Races. I was told in a letter from my consultant that I had PBC and there was no treatment or cure and told he would see me in 12 months should I need to be. Well I can tell you I am Irish and they don't call us the fighting Irish for nothing. Even though I was reeling from shock, I had enough fight in me to probe and find all info I could and read about this thing that had invaded my body. If it lived in me I wanted to know it, try to understand it because my consultant nor GP was of any help, I knew I was not going to get support from them, in fact my GP said I was depressed, and who wouldn't be faced with an incurable disease.....I found the PBC Foundation a wonderful group of people who were the light at the end of a very dark tunnel to me. They armed me with every know writing ever written about PBC. I read it all with great interest, in the end I know more about PBC than my GP but that don't help matters because he appears to have no time for me. I have a wonderful Professor who has guides me through the rough times. I am on Questran Light for the itch and Urso which is thought to slow down progression. I get ever so tired and do what I can when I can. I have a very good husband who supports me all along the rocky road. In ending I would just like to say to those of you who have PBC never stop asking questions talk to others with the same disease not to compare notes but to support one and other through the dark days and laugh with on the good ones....and don't forget to stop and smell the roses along the way