United States

I have pbc and RA,diabetes among other things, i am looking for some people in the united states to talk to, become friends with abs possibly visit that have, pbc,i started a page on facebook please feel free the message on thereit'd called pbc liver disease support group for wichita falls and surrounding areas,anyone is welcome. Would like to make friends who i can talk with who have sane types of problems i do😊

24 Replies

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  • Hi Tama,

    I am in michigan there aren't any support groups here, so I come on here andcfacebook for support. I have. PBC, , Hemochromotosis , Sjogrens all under control today anyway I have good days and bad I take one day at a time hope you are well today🙂

  • There is an USA online PBC support group and the have PBC conferences and have just had one where they have lots of speakers. You can see their website at pbcers.org/

  • Hi Tama - I live in PA which is too east of Michigan for you to visit. I was just thinking last night I wish I had local support.

    Feel free to email anytime.

    Calogia

  • Calogia, where do you live in PA?

  • Hi Tama,

    I am in Bucks County, Pennsylvania which is the suburbs of Philadelphia. I love talking to everyone. I do not have PBC but I do have AIH and a mild form of RA. Hope to speak soon😊

  • New - I live in Chadds Ford, PA, which is right next to West Chester, PA.

    C.

  • Hi Tama. I am recently diagnosed with PCB and have a history of SLE, Raynauld's, Sjogrens, and glaucoma. I don't do Facebook though. I'm coping with all my issues, but I have a few miserable days every now and then. Are you in Wichita Falls, Texas or Kansas? I live in Texas but I don't do Facebook.

  • I live in wichita falls texas

  • I live in coastal NC & there are not any support groups in the entire state. I found this group by accident, by searching the internet. When I asked my doctor about a group he was clueless & could care less. He had 6 other PBC patients & I asked if the nurses would give my phone # or email to them, so they could contact me if they wanted. He said no. I felt totally alone & helpless. I had no one to talk to or discuss PBC, because my family or friends either didn't understand or care to talk about it. It was a very dark time in my life for almost a year. I am so thankful I found this site.

    WendyMarie

  • Hi Wendy - I know how you feel. When I told my family - and they are pretty smart - they couldn't comprehend the situation. Looking normal makes people wonder how bad it can be. My own sister - which I told in a moment of weakness told me the doctors don;t know what they are talking about. I should have known better. After my mother got diagnosed with alzheimers she told me it wasn't alzheimers and the doctors were wrong. She is 2.5 years younger and has nothing wrong with her. Meanwhile the last 4 years have been hell for me. 2 parathyroid surfers (the first one failed and I had to find a new doctor - that was great), diagnosed first with Hasimoto's thyroiditis, osteoarthritis and then PBC. I had sliver biopsy and I am stage 2 with PBC, which shocked me at first until I hear others don;t get diagnosed until 3 or 4. So of course I completely stopped drinking my glass of wine I so enjoyed. But it's a little compromise to live longer. I read that one autoimmune disease generally leads to another. But I hope I am done. It all sucks. But I am grateful I am alive and so far the Urso has brought my numbers down.

    I freaked because I am in AZ and the medical here is - well not the best. But I found a great doc at the liver center. He is getting on in years so I hope I can find peace in the people that follow. I was ready to run back to NY where good doctors can be found easier.

    So I too come here when I need a friend - just someone to understand how it feels to have this weird, unknown, not quite understandable disease. Seriously, your body is attacking your bile ducts and eventually they will fade away - I have seen a few deer caught in the headlight looks with that one.

    Take care everyone and thanks for listening. j

  • Hi WendyMarie...I'm in SC...where are u in NC? There is SE group (NC, SC, and GA)...they have a fb page...are you on FB...wishing you the best of health!!!

  • Hi debim, I live iin coastal NC. What is the name of this FB group for the southeast? Thanks

  • There is an USA online PBC support group and the have PBC conferences and have just had one where they have lots of speakers. You can see their website at pbcers.org/

  • But Wendy, you've got me!! I live in Greenville NC. PBC is a trial for sure. Like being on a roller coaster!!

  • Great! Are you on FB? Let me know if you want to connect on there?

    WendyMarie

  • I would love to connect, just got out of hospitol was there for 8 days

  • Please go to my Facebook page and like it, just trying to get it started, i to feel alone sometimes even though my husband is great and so is my mom they still cant fully understand

  • Thank you for ask the replies i would love to visit with all of you, i just find it easier to talk about things on the phone instead of trying to type everything. I don't get on face book as much as i used to just simply because i don't feel good alot or in so tired any would who would like to chat by phone sometime let me know and wev can swap numbers

  • I am in AZ. Far far from anything.

  • Hi Tama, What is the name of your FB page so I can connect with you?

    WendyMarie

  • My Fb page is Pbc support group for wichita falls and surrounding areas. Any one who wants to join talk please feel free to join, thank you

  • I am in San Francisco East Bay Area California :)

  • There is an USA online PBC support group and the have PBC conferences and have just had one where they have lots of speakers. You can see their website at pbcers.org/ I hope this helps you.

  • Thank you DoreenD,i have had a few people join my group that are with in 2 hours from me

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