Welcome: Welcome to the PBC foundation pages... - PBC Foundation

PBC Foundation

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Welcome

PBCRobert profile image
PBCRobertPartner
1 Reply

Welcome to the PBC foundation pages on Health Unlocked.

Thank you for taking the time to join us. We, as an organisation, have a huge wealth of knowledge on PBC, its treatments, facilities available to us, services offered: not just in the UK, but all around the world!! By tapping in to this knowledge, we can serve each other: ensuring we each know about best practice, we each know what is available, where and how.

Some of the topics covered may be diffiult, emotional or even stir up things within us. We would ask that you reply within the keywords of the Foundation:

care, committment, honesty, respect and transparency. Stick to these keywords and we won't go far wrong. The guidelines are here:

pbc-foundation.healthunlock...

We very much look forward to your tips being shared on topics such as the itch, fatigue, access to a dietitian, etc. We would ask you in the strongest possible terms that whilst it may be pertinent whom you see and where, we ask you not to "name and shame" here. This is an open community and the same rules apply here as in the real world: ethical, moral and legal.

We hope this becomes an enormous font of knowledge guiding both you in your PBC and us in terms of how best to serve our membership all around the world. Please feel free to use all the facilities here: not only to enrich your own journey but also our collective pathways.

Thank you.

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PBCRobert
Partner
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1 Reply
TerrieLee profile image
TerrieLee

Hi, I'm new to this site. Nice to see a support group. I was diagnosed about 2 years ago. Am on ursodiol. My symptoms seem to ebb and flow, right now i am always tired, achy, itchy inside and out. Had blood work done and alkaline phosphatase was a little high. Gastro doc doesn't seem concerned, but i am. when i had liver biopsy 2 years ago was at stage 2 and3/4. Should i be concerned and get another opinion.

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