Former athlete shares her experience with rare liver disease

JACKSON, Tenn. — It may be an “invisible illness,” yet one major symptom remains relentless.

Rare Disease Day is February 28. Primary sclerosing cholangitis or PSC is a rare liver disease characterized by progressive inflammation and destruction of bile ducts, which may lead to fibrosis, cirrhosis, portal hypertension, specific cancers, and ultimately liver failure.

PSC is estimated to affect 29,000 people in the U.S.

The cause of PSC is not completely understood but it is thought to stem from genetic as well as environmental factors. Hear from former NCAA all-American hockey player who is now a hockey coach.

“Being diagnosed with that rare disease was a shock. Over the next several years, there weren’t a lot of treatments. There definitely weren’t clinical trials to be involved with. I was progressing with the disease, and I eventually progressed to a life-saving liver transplant,” said Julianne Vasichek.

A significant symptom of PSC, 91% of patients suffer from a severe and unrelenting itch, clinically referred to as pruritus, which can deeply impact a person and their quality of life.

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