PBC DVD for CDN Lady

I've heard mention of a DVD on this site for those of us with PBC. I live in Ontario, Canada, was diagnosed in 2013 but have received very little information specific to PBC from the Canadian Liver Foundstion and definitely no DVD. Would it be possible to receive one of the PBC DVDs in Canada, please. I am si pleased to have found this site, as I've been feeling quite alone dealing with PBC. It seems most healthy people will only recognize that you really are ill if you've lost your hair or in hospital hooked to tubes and wires.

I am on URSO however didn't start right after confirmation through biopsy as my mom was diagnosed with Cancer at the same time as my diagnosis. I was afraid any bad side affects would affect my ability to be at the hospital daily to help care fir my mom. After she passed, I still put off starting URSO since I didn't feel to bad. Within a few months I was in a terrible state and smartened up. I really noticed a remarkable difference with absolutely no side effects.

If you've been prescribed URSO, start it right away! Good luck and enjoy life to the very best of your abilities.

21 Replies

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  • Hi There, I also have PBC, I live in the UK, we have loads of info here, and this site is brilliant, we are so lucky, I have a copy of this DVD, I would be happy to send this to you if you would like, let me know through this site and I happily arrange to send it to you, Best Regards Jenny

  • Thanks Jenny, I am babysitting grand kiddies today and they're up now. Will respond more later or tomorrow. Got to run...

  • Hi Jenny,

    I learned that we have a PBC Foundation in Canada and was contacted today by them. They have offered to send out an information package and directed me to their online site. I don't know if they have the same discussion groups but from what I looked up on their site it doesn't seem so, so I will keep my membership with you folks if you don't mind and keep in touch. You all seem to have such great input and it's much appreciated!! Thanks again so much and bless you all!

  • Jenny,

    My grandfathers were both from the UK. One from Wales, the other from Scotland. Has there ever been a link to heritage, lifestyle, stress? I seem to only find factors associating middle aged females.

  • I am a male aged 67 diagnosed 4 years ago I was surprised at the odds for a male to get it so your theory is unfounded there seems to be no common factors for PBC..

  • Thank you for your input. I appreciate it. Take care.

    CJ

  • Hello Seajeanie

    If you join the PBC Foundation (free to join) member's section there is some good useful information available and a couple of video. Follow the link above or go to

    pbcfoundation.org.uk/

    In America there is PBCers Organization, both these organizations can be found through facebook.

    LiverNorth livernorth.org.uk/ have a DVD. You would need to contact them directly to find out if they can send the DVD abroad.

    Also have a look at this link

    livingwithpbc.com/pbc-livin...

    it says it is an American site but I have been able to have a look around it and glean some help. I am in the UK

    I empathize with your comments, this is a great supportive site with some wonderful people to share our problems.

    best wishes

  • Thanks for the link to livingwithpbc.com, I was unaware of this site.

    Found it really informative.

    X

  • :)

  • Thanks so much butterflyEi!

  • Hello Seajeanie,

    Have you already joined the PBC Foundation? If you haven't already, it is completely free to do so and can be done by visiting our website, pbcfoundation.org.uk and following the registration details.

    We support over 9000 people in 71 countries around the world. We provide our registered service users with accurate and up to date information.

    You will then have access to our Member's Section on our website where there is a vast amount of information, videos about PBC and how to manage it on a daily basis.

    I hope this is of help. If you have any questions then please do not hesitate to contact us:

    Office: 0131 556 6811

    Email: info@pbcfoundation.org.uk

    Website: pbcfoundation.org.uk

    Best wishes

    PBC Foundation

  • Yes, I have joined. Hope it went through ok!? Can you let me know, please.

    C. Jane Waters

  • Google. Pbcers linnie

    Also PBC Angels liver disease. American support group that also takes British followers.

  • Thank you everyone for the suggestions. I'll have more time to respond tomorrow as I'm babysitting my grandkids today. Thanks again!

  • We have a PBC group in Canada- dedicated to PBC only! Check out our website

    pbc-society.ca or check us out on facebook

    facebook.com/CanadianPBCSoc...

    I was diagnosed in 2012 in Toronto and the Canadian PBC Society really helped me to get the right information and be positive going forward. Last year I decided to become more involved. Small groups get together for lunch or coffee. If you are interested in connecting with others in your area or receiving an information package let me know.

  • Thank you for contacting me. I was definitely surprised to hear we had at PBC society in Canada. I was diagnosed in 2013 and contacted the liver society or liver foundation in Toronto. The coordinator or chairperson, I'm not sure what her title is, told me there was no one local for me to meet with as Liver meetings are only held in North York once month (not near me although I did trek down twice). She did give my name and information to another lady that had PBC so she did call me and talk to me once. I can't tell you how shocked I am to learn that there's a PBC society in Canada and Liver foundation didn't know about it or didn't feel that they should share that information with me. I am more than upset. I've been on my own in this. Thank goodness for the UK site an it's wonderful people. Canadian Liver Foundation really needs to pull up its socks!

  • I would definitely like to receive an information package and would like to know if there are others with PBC in my area.

  • I did check out the suggested site and have to say I don't see any online forum for support, and I noticed that all of the references were still to Primary Biliary Cirrhosis. Nice pictures of some small gatherings.

    I have to wonder at what level and what approach is being taken by PBC Society in Canada to ensure doctors are either educating PBC patients or directing them to PBC organizations for further understanding and help. Has Canada PBC Society looked at the UK PBC site?

    It was suggested at one meeting that liver disease doesn't get as much attention or funding as say cancer because the liver is not a sexy organ. They were looking for a famous person to help bring attention to the cause. While that might aid in fundraising, I'm primarily focused on the education of those people, including myself, who have been diagnosed with PBC disease and sent home with no literature, no direction, no recommendations and no support.

    While the Internet is a great tool, and I'm hearing such great support among peers, I'm hearing too many unanswered questions.

    Yes, I am ticked and it is a waste of my energy if nothing changes as the result of my comments.

    Let's get real and have information provided before we walk out of the doctor's office in shock after being told you have this rare disease for which there is no cure, and it will kill you.

    That's shameful.

  • Just wanted to clear up a statement my earlier post. The meeting that I mentioned regarding whether the liver was a sexy compared to having cancer that was not in UK it was in Toronto.

    When I asked the PBC Society of Canada if they checked out the UK PBC site it was to encourage them to do such great work is the UK is already doing.

  • I am really sorry it took so long for you to find us, but I'm glad you finally did! A big thank you to the PBC Foundation, UK.

    Seajeanie - I've added you to our membership.

    To all Canadians out there with PBC - I hope Seajeanie's post encourages you to join us.

    Email us at: info@pbc-society.ca

    Everyone in our group has PBC and we have members in every province! Getting to know so many other Canadians with PBC - from pre-symptomatic to stage 4 - has been so encouraging in helping me deal with my own journey.

    The Canadian PBC Society works with doctors in Toronto, Edmonton and Calgary who are undertaking very important research - trying to find causes and treatments- striving for a cure. Check out our past newsletters - PBC Connections to get an idea of the PBC research in Canada.

    pbc-society.ca/newsletter.html

    The Canadian PBC Society is not the biggest group, and we certainly don't have the most money, but we are a group of dedicated volunteers with PBC who are committed to helping improve the lives of those living with PBC.

    Look for our new website coming this spring!

  • Thank you.

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