Is death certificate really correct?

November 26, 2011 By

DEAR DR. GOTT: I have read that Caroli first described this disease in 1958 but my great uncle William died in 1944 and the cause of death was Caroli’s renal disease. Can this be correct? I can forward a copy of his death certificate if required. Thank you.

DEAR READER: I have written about Caroli’s disease/syndrome before and also found that Jacques Caroli first described the two conditions (Caroli’s disease is more common, whereas Caroli’s syndrome is more complex and rare) in 1958 while in France. This, however, still leaves us with how your great uncle was purported to have died of the condition 14 years before the gentleman credited with its discovery reported it.
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Patient symptom-free with rare liver disorder

June 2, 2011 By

DEAR DR. GOTT: I have been reading your column for years and have a question about Caroli’s disease. I was diagnosed with it a few years ago and am currently in remission or symptom-free at this time. I found out I had it by accident when I had a CT scan for some pain on my left side. The technician did a full scan of my abdomen and then over to my right side and told me to see a specialist. I went through a series of blood tests and then an MRI scan. The process took about two months before I was diagnosed.

My father and grandfather are now believed to have had the disease, but we did not know it at the time of their deaths. They both had liver and kidney problems and cancer. I have had my boys tested through a blood test, and they are negative for the disease. I have other siblings who also tested negative for it. They have children, but not all have been tested. So far, I am the only one in the family.
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