It has been a really long time that I've shared anything on this site. I read others posts, & sometimes I'll even comment on them. There are a few of you whom I message back & forth with.
I found out where my PBC came from. Not the cause of it but where I got it through the family. Since 2012, when I was diagnosed, I always knew that there are genetic links connected to our PBC. Just never knew from who or where. My mother had a uncle (i think) from her dad's side who passed away. She was talking with a cousin at the funeral home yesterday evening, who recently underwent a liver transplant. My parents asked why she had to get a new liver. That's when both of my parents became socked. She started explaining PBC to them. Yes, finally, a few more questions have been answered on my PBC journey. Still not sure why we have it, but at least I know the genetics in my family. I'm excited to get to meet & figure out, possibly, who had it for her to genetically get it.
Thanks for listening, & as always...
Stay Strong❣️
Shannon
Stage 4 PBC
Southern Indiana
Written by
Shulsey
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So good to hear from you. I was told that my grandmother had liver issues. I never knew that. It's not what she died of. She was 94 when she died. One of my baby sisters has an elavated ALP too. She's hesitant about getting tested further. I'm working on her❤. I have two older sisters, and 2 younger. Nagging them to please get things checked out.
Shannon, whenever I'm feeling weak or scared about my PBC, it's your words that speak to me. "Stay Strong"...... and then I do.😌 You too❤.
Thank you for your kind words Stella 😁. I pray that my eldest daughter would get tests. I think if she had any signs they would be noticed due to her pregnancy. I could be wrong
Good to see your post Shulsey. Funny how PBC can jump generations and sideways. Your insight into PBC has always been so knowledgeable. I cannot trace any relatives with PBC but quite a few with other autoimmune conditions.
Hoping all you ladies and any gentlemen on here from across the pond have enjoyed your Thanks giving holidays.
Nice to hear from you! I don’t post often either, but you’ve been one who has always responded quickly and helpfully to queries I may have. I hope things are going well for you, all things considered 😉. It sure helps us to find another piece of the puzzle that is PBC! Wishing you a blessed Christmas and 2019!
Yes, another piece of the puzzle. Which in turn, brings a few more questions. I wonder how far back this can be traced? Mary Christmas 🎅
Hi Shannon. Thank you for your interesting post. I don't know if my mum or dad had PBC, but both had fatigue and itch symptoms but neither went to doctors much in their whole lives. They were 95 and 86 respectively when they died... My diagnosis was picked up following on (over a year on) a blood test for some other purpose and I wonder sometimes it it a rare disease at all, or just a rarely diagnosed one? It will be good to know how your enquiry goes into your genetic history. Very best wishes to you in all you are doing.
I was diagnosed a year ago. My grandmother died from cirrhosis of the liver but never drank. During this last year I found out 2 of my first cousins both have pbc also. A brother and a sister. The genetic connection seems high in my family.
wow. interesting the family connections. I am adopted so don't know bio family-- BUT luckily was adopted with my twin brother... He has severe severe crohn's disease. I have read the research that shows the same genetic predisposition for PBC and Crohn's.
My grandmother had liver problem also my father and non of them went for any test or see any Specialist. My father was always complaining about his right side of tummy and I remember he was saying that “ I know my liver has problem”but he didn’t know what was the problem and never had been to see any doctor. A Few days before he passes away,he had a blood test which showed that he had PBC. The reason of his death was heart attack.
My first cousin on my dads side has pbc our grandmother had pernicious anaemia which is also an autoimmune disease my hepatologist told me there is a genetic link
Yes, I remember. It has been awhile. Doing a little better these days. Still have my bad days. Numbers are better than they've been in years. Hope you've been well
Mine is coming from my mom who had lupus. She never had elevated liver enzymes but I remember she had problem with drugs which needed to be clear up from liver.
Sadly She left me alone last year😞 the reason was cervix cancer and radiation complication.
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Lack of support for PBC cirhossis....and venting feelings.
Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?
Bit of an epic for which I apologise.
