PBC

[wilkat]

Hi,my name is Kathy it's been a month that I was dx with pbc. I hope to get the insight to this disease from all that can information. Thanks

[Hidden]

Hello wilkat.

If you haven't also heard of Liver North then check out their website. You can read their current and back issues of newsletters plus you can request their free dvd all about PBC. Here is the link. (I was diagnosed Dec 2010, the only symptons I actually know I have is itching. It altered over time taking urso, night time it now tends to be.)

livernorth.org.uk/

[wilkat in reply to Hidden]

Thank you I will check it out.

[butterflyEi]

Hi Kathy and welcome to this wonderful forum. If you have not already joined the PBC Foundation then I would recommend it. It is free to join and there are several video which you may find informative.

There is a web page about patient stories supported by Intercept Pharmaceuticals. It is an American site

interceptpharma.com/patient...

you may find this useful to have a look.

Ask any question and I am sure someone will be able to help and if not direct contact with the PBC Foundation is always helpful.

As you feel your way around PBC try not to be overwhelmed by it all, I am 65 this year, have been diagnosed for 10 years but almost certainly (with hindsight) had it for longer. Some contributors on here are young mums so they will have a different insight into their situations especially if they suffer with the PBC fatigue.

If you use Face Book you can also find PBCers Org. in America, there is a Canadian site and I am sure others around the world will be able to give links.

hope this is helpful

best wishes

[Hils67]

Hi Kathy, welcome to the forum. I'm recently diagnosed too...just before Christmas. You will s forum and the PBC foundation website really useful, and as peridot says the liver north dvd is also really good. You're probably feeling confused and scared, which is normal. it takes time to come to terms with your diagnosis, but after a while and with lots of support its not as bad as you first think. I'm lucky and was caught early, so taking the Urso helps minimise damage to the liver and slight changes to lifestyle (like not getting hammered at the weekend) helps keep things under control. I've decided that my diagnosis was a warning light to look after myself a bit better...which is what I'm trying to do. I'm not a saint and I'm not going to let PBC rule my life, but I'm being a it more sensible about what I eat...and after 3 months on the urso my liver function tests are coming down, some of them nearly normal!

This forum is wonderful for information, support and inspiration. Feel free to ask any questions and people will help where they can.

Best wishes

Hilary xx