Rare Liver Diseases

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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Amanda W.
September 14, 2020

I was diagnosed with Primary Sclerosing Cholangitis (PSC) when I was 23 years old, a year into my marriage and living far from home for the first time.

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Linda K.
September 9, 2020

I was diagnosed with Alpha-1 Antitrypsin Deficiency and became very ill very fast. I was only sick for 5 months before I was at a 40 MELD and earnestly dying.

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Sophie H.
August 27, 2020

At age three, I was diagnosed with Primary Sclerosing Cholangitis/Autoimmune Hepatitis overlap as well as Crohn’s disease.

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Camden U.
August 6, 2020

When they ran his blood panel, the immediate results showed that his ammonia level was over 1,000. Ammonia is processed in the liver.

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Kennedie K.
July 23, 2020

Kennedie has Progressive Familial Intrahepatic Cholestasis type 2. Her liver doesn’t produce the protein that exports bile out of the liver to break down fat and absorb fat soluble vitamins.

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Bryan D.
May 20, 2020

Bryan was a 22 year old U.S. Marine in perfect health. He was diagnosed with a rare chronic liver disease (Primary Sclerosing Cholangitis).

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Tammy P.
May 20, 2020

They detected “elevated liver enzymes” and encouraged me to be seen by my doctor. This turned into 4 months of lengthy and extensive testing.

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Mindy C.
May 20, 2020

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.

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Dale M.
May 20, 2020

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.

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