NC Members?

[kalyhan]

Are there any members from North Carolina?  I'm thinking of possibly starting a support group. 

[emetobella1229]

Yes my mother (5 years post liver transplant) and I am undiagnosed as of now but do have a positive ama and strong family link obviously. We live in Raleigh and would love to be part of a support group. 

[Kevin733]

I'm in Virginia, so just one state away

[kalyhan]

Maybe there is something we could arrange every couple months?  I live just north of Charlotte NC

[dianekjs]

I'm in Raleigh, but don't have a PBC diagnosis, just a positive AMA and some vague abnormalities on ultrasound. Liver function tests have been excellent. I have plenty of other health issues (autoimmune) that put me at risk for developing PBC, but no real PBC symptoms at this time. 

[kalyhan]

Well,  we have two in Raleigh! Positive diagnosis or not,  it may still help us collectively to get together. You often hear from others that some people get little support from family and friends,  which is sad. I have a confirmed diagnosis for PBC,  Lupus,  Acute Pancreatitis w/sinusitis connection (soon to be labeled as an AI disorder),  Barrettes Esophagus, and a few others. I'm tempted to not go back to any doctor because they keep adding more diagnosis to me... Yet,  others try to out-sickness me lol. It's not a game. I would love to sit down with others over lunch to discuss how others are getting along, what other testing or treatment you may be getting. Through reading some of the boards,  others get different treatment,  some doctors have little experience with PBC... And so on. So hopefully we will hear back from a few more people and then perhaps make plans together to meet somewhere.  Suggestions are certainly encouraged! There is a local lupus group that I hope to meet in two weeks,  but I don't know anyone else with PBC or those at risk for it. 

[Djscallan]

Not in NC, in Blairsville , Ga

[WendyMarie]

Yes, I live in coastal NC, 2 hours from Raleigh. My doctors tell me they have 7-8 PBC patients, but privacy act prevents them from even giving them my contact info. Would love to meet anyone with PBCers  to talk in person.  Diagnosed in 2013, asymptomatic. Doing well, so far.

[vpeel2003]

Yes! I'm in eastern North Carolina, about 2 hours from Raleigh. I was diagnosed about 3 years ago. Fatigue is a huge issue. Have more questions about PBC than answers.

[kalyhan]

Not that I'm happy to see anyone with autoimmune issues, but it would be good to speak with others face to face that have similar issues. This board in itself can  be a big help,  but to know what others in your region are getting for advice and such from their doctors would also be helpful. 

[ranrace]

Elon, nc 

[Rsbrown]

Hi, I was just diagnosed last week although have had symptoms for months. I live in Raleigh and would love to get together. I realize this was originally posted 10 months ago.

[kalyhan]

So we want to set up a meet and greet? We could possibly do something under a group chat? Suggestions??

[Ellewoods1]

I’m in western NC.