Today is International PBC Day, when patients, families and group come together to raise awareness about PBC. In fact, during the month of September, for PBC Awareness Month we have a host of activities planned.
International Rare Disease Day is an opportunity to raise awareness for all rare diseases including PBC. 1/12 Canadians will have a rare disease. There are 7,000 rare diseases.
Thanks to the Gastrointestinal Society in association with the Canadian Society of Intestinal Research for this excellent graphic describing Liver Cirrhosis and providing you with a tool to discuss your Liver with your specialist. Note: There is a spot on the graphic to record your Liver Disease, Liver Stiffness and Fibroscan Score. Download the graphic here.
We arrived in Winnipeg for our Living Well with PBC Workshop on October 20, 2018. We got off to a good start with a mild sunny day. Our amazing group of participants came ready to share their PBC stories and support each other. The morning focused on learning more about PBC and the most effective ways for us to monitor our PBC along with our specialists. In the afternoon we took time to reflect on satisfaction in different aspects of our lives. Then after a series of steps, we identified areas small changes that we could make that would improve our quality of life. Of course all of this was done by individuals and was specific to their life and situation. We wish each of our participants trying out some small changes all the best!!!
On October 14, 2018 a fine group of PBC patients and family members came together in Calgary, AB to participate in our Living Well with PBC Workshop. We spent the first half of the day getting to know each other and learning more about PBC – focusing on aspects of PBC that we should monitor and discuss with our PBC specialists. In the afternoon the focus was on identifying areas where individuals want to make small changes to improve quality of life. We focused on manageable changes that we could begin on “Tuesday”. Many participants have already started created new habits to help them live well!
On October 11, 2018 we gathered with the Cowichan community in Duncan BC to hear Dr. JP Wallach talk about PBC. Dr. Wallach explained that PBC is an autoimmune disease where there is a genetic predisposition that is triggered likely by some environmental factor. For many years liver disease carried a stigma and Dr. Wallach is working hard to dispel the inaccurate stereotypes that sometimes go along with liver disease. We want to make sure people understand that they have done nothing to cause their PBC; it is not brought on by alcohol use or lifestyle choices. These important messages are supported by our medical community and it is important that our entire community know this.
On October 10, 2018 a large group gathered to hear renowned PBC expert Dr. Eric Yoshida speak about PBC and answer questions from PBC patients and their family members in attendance. BC Regional Coordinator thanked Dr. Yoshida on behalf of all of the attendees. It was a very informative and enjoyable evening. See all the photos in our photo gallery.
Join us for the National PBC Patient Conference June 7-9, 2019 at the Toronto Airport Hilton. Hear from top international PBC experts, meet others with PBC, exchange ideas and learn how to live well with PBC. SOLD OUT
The Liver Meeting 2018 for the American Association for the Study of Liver Disease will be held in San Francisco this year. Among those attending will be Liver Specialists and Liver Patient Support groups from around the world.