For Patients Caregiver Tips and Advice For Medical Professionals

Brenda C.

Autoimmune Hepatitis/Primary Biliary Cholangitis

I was diagnosed with AIH/PBC (Autoimmune Hepatitis/ Primary Biliary Cholangitis) crossover and Stage 3 liver fibrosis in September 2011 after 6 months of extreme fatigue. I became jaundiced and was sent to my primary care physician to find out why. It took 4 different physicians and 3 weeks of testing, including a liver biopsy, to come to a diagnosis. I was at the hospital getting blood drawn and/or seeing a specialist almost daily during that time. I was put on steroids and immunosuppressants to get the AIH under control first. After 2 years of normal LFTs, in May 2014, I was started on Ursodiol for PBC. My LFTs have remained in the normal range and my last biopsy showed a normal liver.

I have been an American Liver Foundation NPAC member since 2015, and have enjoyed being able to advocate for patient needs on Capitol Hill several times since then.

When we get the diagnosis of a disease we have never heard of before, our first instinct is to go on the internet to see what we can find out. I did that, and scared myself half to death. My best advice is to go to reputable sources such as the ALF and Mayo Clinic, or ask your specialist for brochures. Also, support groups are helpful so you don’t feel so alone with rare disease diagnoses.


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