I've decided to incorporate some of Dr. Jones's wisdom into our Tuesday's 'Tips' These are all from his book The Definitive Guide for Patients Who Have Primary Biliary Cholangitis. This an amazing source of information on PBC from a world leading expert. I strongly encourage everyone to have a copy.
He feels there are two very important aspects of this disease =
1. Learn as much as you can about this disease
2. Do not be intimidated about asking your doctor questions about your treatment. We deserve the best care possible. I love this quote from him " do not die of not wanting to challenge your doctor".
I hope we all learn as much as we can... great sources for accurate information are The PBC Foundation, Canadian PBC Society, American Liver Foundation, and Mayo/Cleveland Clinics. We owe it to ourselves to be informed....
Written by
DonnaBoll
Administrator
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I know how intimidating doctors can be. Being 74, I am of an era that whatever doctors said was 'golden'. Learning all we can about PBC arms us with information that we we should be able to have an adult exchange with our doctors. We don't have to be challenging - just questioning. If they are 'out and out' outraged by being questioned, then I think they have the problem. We have to advocate for ourselves when we feel we need perhaps a different way of treating our personal journey with PBC. We all face it differently. We have to be informed about the care we deserve.
Since my diagnosis I have done so much patient research. My GI & hep encourage trying to stay a step or 2 ahead and gain knowledge. It helps me and it helps the dr so we’re able to discuss matters better and I’m not in the dark.
I wish everyone was as diligent as you are about staying informed. What sources do you use for your research? I usually suggest The PBC Foundation, American Liver Foundation, Canadian PBC Society, and the Mayo and Cleveland Clinics. If you have access to any of the GI or hematology medical journals, they can be very helpful with some of their articles. I love that you and your doctor has 'discussions'. Obviously he doesn't feel threatened by any of your input. Learning goes both ways, doesn't it?
When I research, Mayo and Cleveland usually have a link so I read that. I receive emails from Genfit (I think that’s how it’s spelled), regarding info on their research. And I follow autoimmune association which sometimes has good info. I’m all over the place, lol! I may have surprised him at times with some of the things I come up with. We have a great patient- dr relationship.
Yes. They are a French Biotechnology Co. In you look them up you see they were heavily involved in Elafibrinor 1st ever drug developed in house to be FDA approved.
Thanks, I will. Please feel free to post any articles you come across in any of your sources that might interest us. We all benefit from reading what others find.
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diagnosed with PBC today 23/04/13
