Patient Stories

I was born with the liver disease known as Biliary Atresia. My parent’s first suspected something was wrong when they noticed that my skin and eyes were yellowing.

I had difficulty with my memory and I began to experience loss of appetite, lethargy and difficulty concentrating. All the symptoms that I know now to be of liver failure.

Ten years earlier, Jack was diagnosed with alpha-1 antitrypsin deficiency, an inherited disorder that can ultimately lead to liver failure.

I currently manage a chronic liver disease called Autoimmune Hepatitis. At the age of 12 I fell into complete liver failure and was rushed to Egleston Children’s Hospital in Atlanta.

Michaela Layton was diagnosed at age 17 with Wilson Disease, a rare genetic disease that causes copper buildup in the liver.

After receiving an AIP (Acute Intermittent Porphyria) diagnosis at age 16, Heather struggled for years to manage her symptoms, experiencing multiple attacks a year.

Never would have thought I would have liver disease. I began my journey with liver disease in 2011 and despite ongoing treatments and medication, I ended up being hospitalized in May of 2012.

Thinking it was a complication of the surgery, and turns out it wasn’t. I was later diagnosed with primary sclerosing cholangitis (PSC), a rare liver disease.

After weeks of tests, we finally received a diagnosis… Biliary Atresia. Molly’s surgeon shed tears with us as she delivered this heartbreaking news.

After a battery of tests, she learned from her Mayo Clinic team that she needed a liver transplant, a message that stunned her, given her history of excellent health.

Carter had jaundice since birth, but not the kind that goes away with time. His doctors confirmed that he had liver disease when he was 7 weeks old.

Working for ALF these past 10 years has been a mission for me. I had NASH, I’ve had a transplant, and every time I am able to offer someone hope, I feel so good.