Rare Liver Diseases

I was diagnosed with stage IV intrahepatic cholangiocarcinoma at the age of 46 and given six months to live. I didn’t feel sick, so how could I be dying?

Since the day she was born, Valen Keefer, has faced a challenging medical heritage. Everyone on her mother’s side has suffered from polycystic kidney disease (PKD).

Kaila became involved with the American Liver Foundation (ALF) in 2017 after her friend, Courtney, was diagnosed with liver cancer.

In January 2017, Anne was diagnosed with end-stage liver disease. Over the next two months, she experienced several hospitalizations, multiple side effects and of course, tremendous worry.

Casey’s pediatrician referred her to a liver specialist and after multiple tests, she was diagnosed with Wilson Disease.

David is a two-time liver transplant recipient. In 1997, he received a liver, and in 2007 he received the liver and kidney.

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

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.

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.

Evan received his gift of life on May 21st, 2020 during a 10 hour transplant surgery. He was first diagnosed at 18 months old with PFIC-3, a hereditary liver disease, which for years had been treated.

You have to stay positive at all times. Family and friends are the key to helping you through the rough times. Follow the directions from your medical care team. Be compliant.