It's nothing compared to not knowing what was wrong
Florence Charles experienced debilitating itching, especially on hands and feet, requiring ice baths and constant relief measures before diagnosis. Primary sclerosing cholangitis is a chronic autoimmune disease more common in Europe; Brazil has roughly one-third the prevalence with no concrete epidemiological data.
- Florence Charles, 29, diagnosed with primary sclerosing cholangitis two months after marriage
- PSC affects roughly 6 per 100,000 people in Europe; Brazil's rate estimated at one-third with no concrete data
- Disease is incurable but manageable; Florence takes 13 medications daily
- Liver transplant is the only definitive treatment, reserved for severe cases
A 29-year-old woman discovered she had primary sclerosing cholangitis, a rare autoimmune liver disease, after experiencing severe itching and skin tingling. The incurable condition causes bile duct inflammation but can be managed with medication.
Florence Charles was newly married when the itching started. Two months after her wedding, the 29-year-old English woman began feeling a persistent tingling across her skin, followed by waves of nausea and exhaustion. She attributed it all to the stress of newlywed life—the adjustment, the change, the simple fatigue of beginning again with someone else. But the itching would not stop.
It grew worse. Her hands and feet became the epicenter of an unbearable sensation, as though her skin itself had turned against her. She would ice her feet before bed, desperate for relief. She took constant showers, standing under the water hoping the sensation would wash away. Her husband, Josh, watched her struggle through nights of discomfort, her body unable to settle. The itching was so severe that she could no longer work. She could barely function.
When Florence finally saw a doctor, blood tests revealed jaundice—a sign that her liver was beginning to fail. Further investigation uncovered the cause: primary sclerosing cholangitis, a rare autoimmune disease in which the body attacks its own bile ducts, causing chronic inflammation. The diagnosis came as both relief and shock. There was a name for what was happening. But there was also a hard truth: the disease cannot be cured.
Primary sclerosing cholangitis, or PSC, is a chronic condition where the immune system mistakenly inflames the bile ducts that carry fluid from the liver. Left untreated, it progresses toward cirrhosis and liver failure. The disease is more common in Europe, where roughly six people per 100,000 are diagnosed with it. Brazil sees far fewer cases—estimates suggest the prevalence is about one-third of Europe's rate, though concrete data remains scarce. Men are affected twice as often as women, and the condition frequently appears alongside other autoimmune disorders, particularly inflammatory bowel disease and Crohn's disease.
The itching that brought Florence to diagnosis is one of the disease's hallmark symptoms, though far from the only one. Patients experience jaundice, changes in urine color, abdominal pain, fatigue, weight loss, and disrupted enzyme levels. For Florence, the itching was relentless enough to steal her ability to work, to sleep, to feel at home in her own body. "I couldn't get rid of the sensation that my entire skin was irritated," she said.
There is no cure, but the disease can be managed. Florence now takes thirteen medications daily to keep her symptoms under control. She has adjusted her prescriptions, found a regimen that works, and reclaimed pieces of her life. The only definitive treatment—a liver transplant—is reserved for the most severe cases, when medication no longer holds the disease at bay. For now, she lives with the knowledge that her liver will require vigilant management for the rest of her life, but also with the knowledge of what she has, and what she can do about it. "It's nothing compared to not knowing what was wrong," she reflected.
Citações Notáveis
I couldn't get rid of the sensation that my entire skin was irritated. I wasn't even able to work anymore.— Florence Charles
The itching was so severe, especially on her hands and feet, that she had to sleep with ice packs on her feet and take constant baths for relief.— Josh Charles, her husband
A Conversa do Hearth Outra perspectiva sobre a história
Why did it take so long for Florence to get a diagnosis if the itching was so severe?
Because itching is such a common symptom—stress, allergies, skin conditions—that it doesn't immediately point to the liver. She was newly married, exhausted, adjusting to a new life. It made sense to her and her doctors that the symptoms were stress-related. The blood work for jaundice was what finally broke through.
Is this disease genetic, or did something trigger it?
It's autoimmune, which means her own immune system turned on her bile ducts. We don't fully understand why that happens in some people and not others. There's no clear trigger, no moment where you can point and say "that caused it." It just happens.
Why is it so much rarer in Brazil than in Europe?
That's the honest answer—we don't know. Geography, genetics, environmental factors, diet—any of those could play a role. But the data in Brazil is incomplete, so we're working with estimates and educated guesses.
Thirteen medications a day sounds like a lot. What are they treating?
Not just one thing. They're managing the inflammation, protecting the liver, controlling symptoms like itching and fatigue, and preventing the disease from progressing. It's a multi-pronged approach because the disease itself is complex.
If a transplant is the only cure, why isn't that offered to everyone?
Because transplants carry their own serious risks—rejection, infection, the need for lifelong immunosuppression. You only do it when the alternative—liver failure—is worse. As long as medication works, you stay the course.