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There is no way to calculate a timeline for the progression of Hernandez's disease but doctors warn she desperately needs a transplant as her condition deteriorates.
Primary sclerosing cholangitis affects about one out of every 10,000 Americans.Heidi Hernandez was diagnosed with a rare condition of the bile ducts called primary sclerosing cholangitis when she was three years old.She had a liver transplant to treat the disease at age nine but it has since come back.Patients usually find out they have the disease after a routine X-ray or blood test being performed to test for something else.Even after their diagnosis, patients often feel fine and do not experience symptoms of the disease for years.The ducts carry bile - which helps with digestion - from your liver to your stomach. This makes them harden and causes damage to the liver.
Extreme itchiness that will not go away no matter how much you scratch and exhaustion are symptoms of the disease.
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She reached out to Chicago musician Chance the Rapper to see if he could get the teenager tickets to Coldplay's Chicago show last week.
He did, and Sanchez went with Hernandez and her boyfriend to the show on Thursday at Chicago's Soldier Field.
While the condition progresses at different speeds in each patient, doctors warn that Hernandez is beginning to experience liver failure.