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Approximately 6,000 liver transplants are performed in the U.S. each year. But more than 17,000 Americans are still waiting for donated livers to become available for transplants.

ALF asked Dr. Boyer to share his perspective on improved prospects for PBC patients and their challenges to effective treatment.

My story begins with a diagnosis of Primary Sclerosing Cholangitis. After the diagnosis, I required numerous stents to be placed in my bile duct through a procedure called an ERCP.

My name is Danielle and I am a 26 year old biliary atresia survivor from Staten Island, NY.

During surgery my doctor discovered I had cirrhosis of the liver. I had PSC (Primary Sclerosing Cholangitis). This is when bile ducts in the liver are clogged or closing.

After ten days in the hospital and an ERCP (a scope of the bile ducts), they diagnosed me with PSC. The ERCP showed that my bile ducts were narrowed and the bile was being blocked.

I was diagnosed with Nonalcoholic Fatty Liver Disease (NAFLD). It was a huge shock to me since I never had any major health issues.

All this time I was yellow, getting weaker, struggling to walk, unable to climb stairs, sleeping 12-14 hours a day, in pain, only eating soup or porridge yet my weight was increasing.

Christy found out she had cirrhosis on her mom’s birthday when she started to feel ill. She and her husband went to the hospital where he thought he was going to lose her in front of his eyes.

After several months in and out of the hospital, numerous tests and a biopsy, Christian was diagnosed with autoimmune hepatitis before his first birthday.

Charlie received an upper endoscopy and banding procedure to cut off blood flow from esophageal varices that had developed due to his portal hypertension.

Life with PBC can be a lonely journey. It’s common for people to feel isolated, frightened and overwhelmed after they’ve been diagnosed with the disease and when they experience new symptoms or setbacks.