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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have had PBC for 36 yrs. I don't itch and have tons of energy, My alk phos is always elevated but my bilirubin is always normal. My mother also had it and lived another 22 yrs with a liver transplant. She had 48 hrs left to live when she got it. So grateful!!!!

March 5
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Answer Summary

Members rallied around the idea of starting a Zoom support group for people living with PBC, with several expressing enthusiasm and interest... Read more

Members rallied around the idea of starting a Zoom support group for people living with PBC, with several expressing enthusiasm and interest in joining or helping facilitate. Practical suggestions included keeping the pilot group small (around 6 to 8 members) to allow everyone time to share, using an unstructured format where members could check in about their week and support one another. Though the group did not get off the ground after seeking admin approval, the thread ended with warm encouragement and an open invitation for others to pick up the idea.

A myPBCteam Member

Hello JoanKlatt2
We will be looking at doing a pilot if it gets approved. It is a support group rather than an education group. The Education piece mightbe something the community managers can look at?? A support group is very unstructured hence the members can share where they are at, did they have a good week, a bad week, are they improving do they have any info based on their own experience to help another member who's having a bad week. Its that kind of group.

March 5
A myPBCteam Member

Would be interested in joining the group if you expand Of course I understand that you would like to keep group small and manageable so another alternative would be perhaps to learn from the group about new treatments for PBC
I will be seeing my hematologist so will pass on any new information that he relays to me for he actually takes time with his patients to have a conversation and even answer questions !!

March 5
A myPBCteam Member

Hi Lisa
Thanks for the update. Look forward to you working out the kinks and getting us going.

March 14
A myPBCteam Member

Hi Vickie. That sounds like a great idea. Sometimes it is easier to ask questions when there is a person that you can see. I've wanted to do a meet-up with people close to where I live.

March 8
A myPBCteam Member

We will do a pilot first as soon as I get the ok from administration. The group will be small so it’s successful. Then hope to add more groups after it’s vetted by admin.

March 31

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