What is This is My PBC?
This is My PBC is a disease awareness initiative developed and funded by Ipsen, that seeks to raise awareness of the need for people living with PBC to know more about their disease and understand that everyone’s experience is different – and valid. By taking a personalized approach to your PBC management, you can empower yourself with the knowledge to have meaningful conversations with your healthcare professional, and play a more active role in your PBC management and care. You may be unique, but you are not alone.
Meet Jo, Gill and Wendy, living with PBC
Although they share the same disease, their journey of living with, and managing PBC, has been personal. Hear their individual experiences and take charge of your own PBC journey by learning more about the condition and talking openly with your doctor.
Meet Gill
Gill is a devoted mother and grandmother who loves spending time with her grandchildren and gardening. She also has a real passion for her volunteering work. She has lived for over 20 years with PBC.
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Meet Jo
Jo’s journey to diagnosis began about 10 years ago, when she contacted her GP feeling tired and run down, but it wasn’t until four years ago following some routine blood tests and a liver biopsy, that she received a diagnosis. Support groups, like the PBC Foundation, have been a gamechanger for Jo, providing support, education and a like-minded community.
Learn more
Meet Wendy
Wendy has been living with PBC for over 13 years, and it took five years of GP and specialist appointments to receive her diagnosis. Her advice to other people living with PBC is to go to your doctor prepared to ask lots of questions, manage your condition as well as you can and be kind to yourself.
Meet WendyUnderstanding PBC
This guide provides an overview to help understand and manage PBC. It covers 3 key areas: understanding what PBC is and who it affects, recognizing and coping with its symptoms, and learning about treatment options, lifestyle support, and the importance of ongoing monitoring.
Getting to know your PBC
What is PBC?
Why does PBC happen?
Who is affected by PBC?
What are the goals for managing PBC?
Reflection Session:
My unique experience of PBC
Living with symptoms
This address common symptoms of PBC, how they may change over time and how to reduce symptoms
Taking care of your PBC
This section covers the key aspects of managing PBC:
How is PBC treated?
Lifestyle and supportive care
Why regular monitoring matters?
What tests might you need?
Who is on your care team?
Where will This is My PBC take me?
You can paint a clearer picture of what it is like to live with PBC and with your doctor help make choices that are right for you, such as:
- Know how your symptoms make you feel. Keep an eye on your symptoms between your doctor’s appointments and keep a list of topics to discuss with your doctor the next time you see them.
- Know your alkaline phosphorate (ALP) numbers and what they mean for you. Ask your doctor questions about your ALP and bilirubin levels, and what they mean for your liver health.
