We need to get the right information out th... - PBC Foundation

PBC Foundation

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We need to get the right information out there!


I was freaked out after my diagnosis of PBC read all the information out on the web as my vast library of books had nothing mentioned and freaked me out more. I am a Naturopathic Practitioner, Certified ORT (operating room tech) so I knew the body inside and out not an organ I had not seen! I have been in both Natural health and Allopathic Medicine since age 15 when I was a certified nurses aide. My brother is a D.O. told me I don't think you have that its real obscure disease and he would look up what he could he was very limited as he has never seen it in his practice, which is huge a block long building in a large california town with over 30,0000 patients seen. I thought I knew almost everything out there....Most Doctors don't know or understand PBC they refer you out to gastroenterology. So tell your story I am working on a book all about us to help others!!! Any information your would like to contribute will be noted! So please send me your story and I will contact you in return! please send any and all information to research.pbc@gmail.com unusual or odd as connections might be made like geographic tongue and question that no one can answer as I will find the answer! when diagnosed that's all you want and no one want to take the time to tell you , but now this book will help and direct people for support here like I have received too!

2 Replies

Hi. Are you still interested in stories for your book? Briefly, for now, I will share this....

I was just diagnosed w/PBC although I suspect that I've had it for over 2 yrs. now. This would explain some of the symptms starting then. am currently on 2 meds -urso & cholestramine


I'm glad your writing a book about PBC it's very rare. I was diagnosised many years ago 40 years old I am now 53 , continue living your life, eat what makes u happy , exercise, drink a lot of water, I recently was told it's gone into cirrhosis what's funny I don't feel any worst then I did 10 years ago. I have had many symptoms

Their are some u just learn to live with. I would love to contribute to. Your book what website or email should I use!


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