For Patients Caregiver Tips and Advice For Medical Professionals

Cathy K.

Primary Biliary Cholangitis

I was diagnosed in 2007 after elevated LFT’s since at least 2002. One day in late 2006 I awoke with horrific itch, head to toe. The doctor I saw ran an AMA2 test and sure enough, PBC. The following July I had the biopsy and confirmed Stage 1 PBC. Since then I have progressed to early-Stage 4 despite using ursodiol daily. Fatigue and pruritus are the only symptoms I have and both have been life changing for the quality of life I have. I continue to life each day fully and am committed to patient advocacy and research of PBC causes and someday… a cure.

My advice is to educate yourself about your liver. Each liver patient is different and you should know how your specific liver disease effects you. Be your own health advocate – it’s your body and no one can know how you feel better than you. Liver disease is a part of your life, it does not define you as a person. Get support from people who understand your situation because they are also living it. Your family, friends and co-workers will be supportive if they understand why this effects you. Be open to new information, and check in with your health care team regularly. Follow your treatment plan. Lastly, keep your eye on the future, it is where you are going!


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