Patient Stories

Emma was a 9 year-old 4th grader when she was diagnosed with Autoimmune Hepatitis. For a year or so before she was diagnosed, she was participating in gymnastics and cheer.

My daughter, Elise, was born in October 2011 with the rare pediatric liver disease, Biliary Atresia. We were told that she would likely require a liver transplant by age 2 in order to survive.

I was diagnosed with PBC. My symptoms other than fatigue were non existent. At that time I started having bleeding from esophageal varices, that however was just outpatient and manageable.

For every liver transplant, there are two stories. The story of the donor and the story of the recipient. Sometimes—not often—there is a third story.

I went into surgery at about 225 lbs. and when I got home after rehabilitation I weighed 138 lbs. I worked with in home physical therapist and eventually start slowly going back to a health club.

I was diagnosed with PBC at the age of 43. I suspect that I had it long before that as I had already been diagnosed with Hashimoto’s Thyroiditis and had been told I had high liver enzymes.

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.