I need to apologize to so many of our newer members. Beginning in this role February 1st, I am still learning. I just found out, being new as the facilitator of this amazing group, how to find the names of the 'new' members..... let me introduce myself to all of you.
Hi - and welcome! My name is Donna - I facilitate this support group for The PBC Foundation - Health Unlocked. 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). 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. 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. 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. 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……