Patient Stories

PSC is a disease-causing bile duct inflammation and scarring that eventually leads to liver failure. Its cause is unknown and its only cure is liver transplant.

I was born and diagnosed at the age of two with Tyrosinemia, a very rare metabolic disease. This is where the liver doesn’t have the proper enzymes it needs to break down protein.

When Jordan was 16, he was diagnosed with Primary Sclerosing Cholangitis (PSC) and although he strived to keep his dream alive, he suffered from major infectious attacks from his disease.

My husband was diagnosed with Primary Sclerosing Cholangitis (PSC). PSC is a Chronic liver disease where the biliary system of the liver suffer chronic inflammation.

I was first diagnosed with PBC in 2010, after months of medications that weren’t helping or working the way my Doctor hoped. Upon further testing, I was diagnosed with PSC in 2011.

His medical and transplant teams spent the next three months stabilizing Leonard’s condition so he could receive a liver transplant. Prolonged use of OTC medications had damaged his liver.

It took many hospital visits, inconclusive tests and finally a visit to learn Emma had Crigler-Najjar Syndrome, a rare life-threatening genetic condition that affects the liver.

Having a child with a rare genetic liver disease can be filled with so much fear, anxiety and uncertainty. Our son Isaac, 17, has genetic mutations on his ABCB11 gene.

Towards the end of my pregnancy I developed an unbearable itch over my entire body. I was diagnosed with cholestasis of pregnancy.

I was experiencing complications and attending Riley Hospital for Children, to soon discover after a year of tests that I was diagnosed with Wilson’s disease.

I entered the US Military at the age of 18 and caught Hepatitis C while serving as a medic.

After a colonoscopy and a liver biopsy, it was determined that I had Primary Sclerosing Cholangitis(PSC) and Ulcerative Colitis.