for our 'newest' members....

[DonnaBoll]

Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. If you are new to your diagnosis, first of all, take a breath. It’s ok. We all, myself included, have been exactly where you are right now…. scared, unsure, mad, sad, and so much more.

Stop googling for information - get your info mainly from The PBC Foundation (pbcfoundation.org.uk). It would be so beneficial for you to join The Foundation as well - it’s free to do so.Their website has so much to offer someone who is just diagnosed as well as the person who has had PBC for many years.. Some other great resources are the Mayo and Cleveland Clinics, American Liver Foundation, and The Canadian PBC Society. I strongly encourage you to purchase Dr. David Jones's book The Definitive Guide for the Patient With Primary Biliary Cholangitis (on Amazon) He is the leading expert in the field. His entire book is easily understood by anyone.

Even though I live in the US, obviously many of our members live not only in the UK but around the world. Remember that every one of us has PBC differently from any other person in the group. Always be patient and kind to yourself. It takes everyone time for it all to become a reality. It’s natural to often feel we are no longer the person we once were. Never feel alone!

Urso is a must drug to take. It has been proven to be the first line treatment for PBC. Take one day at a time. Maybe you are just new to this group. We are all in this together. The more you learn from these reputable sources then the more informed you are of the care you should be getting and deserve. No one should feel they have no one to turn to, even if it’s to vent. Feel free to ask questions here. By sharing, we all benefit. Don’t hesitate to ask others for similar experiences. Everyone here is always willing to lend an ear or give a kind word. We all learn from each other. Remember to take that breath……