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What I Want to Tell Others Fighting This Rare Liver Disease

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I was diagnosed with progressive familial intrahepatic cholestasis (PFIC), a rare liver disease, when I was 4 weeks old. PFIC is an ultra-rare condition that worsens over time and affects about one in every 50,000 to 100,000 live births worldwide.

At the time of my diagnosis, there was little research or understanding, and this was very scary. My family watched the gradual onset of pruritus, a hallmark symptom of PFIC that causes insatiable itchiness.

As my motor skills developed, my scratching worsened, and I would itch my skin until I bled. I underwent my first surgical intervention, a biliary diversion, when I was 6 months old.

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