Caroli's disease

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What is Caroli's disease?

Caroli's disease is a rare congenital disorder of the intrahepatic bile ducts. Simple Caroli disease is characterized by enlargement of the bile duct alone while Complex Caroli disease involves fibrosis of the liver and portal hypertension (high blood pressure in the portal vein).

Common symptoms reported by people with Caroli's disease

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with Caroli's disease

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(UDCA Ursodeoxycholic acid)
Type
Prescription Drug
How many have tried
1
Tried for
Caroli's disease (1)

Data from patients with Caroli's disease, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with Caroli's disease

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(UDCA Ursodeoxycholic acid)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Caroli's disease (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with Caroli's disease, who reported starting treatments within the last 5 years.
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Who has Caroli's disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 1
30s 5
40s 5
50s 2
60s 3
70+ 3
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 3
20-29 years 0
30-39 years 2
40-49 years 0
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

85% Female
15% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 7
Not Diagnosed 1

These charts show data from Caroli's disease patients who have completed their condition history
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