Rare Liver Diseases

Lisa’s Story
July 19, 2022

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?

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Valen
May 25, 2022

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).

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Kaila’s Story
April 15, 2022

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

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Anne’s Story
April 5, 2022

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.

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Casey’s Story
March 31, 2022

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

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David’s Story
January 18, 2022

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

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Jack & Gene J.
May 4, 2021

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

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Michaela L. & Haley W.
April 17, 2021

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

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Heather
January 21, 2021

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

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Frank M.
January 5, 2021

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.

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Evan P.
October 2, 2020

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.

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Robert F.
September 22, 2020

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.

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