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A member asked:
31yr f with arpkd (genetic test confirmed) on liver transplant list with no damage to kidney. are there research centers that would look at my very rare atypical case? any other thoughts or ideas?
2 doctors weighed in across 2 answers
Yes, you have Caroli syndrome. Liver disease is more serious in this syndrome so liver transplant is necessary for end stage liver disease. Polycystic kidney disease is present but renal function impairment varies a lot in this syndrome and your kidney function are fortunately normal.
Answered 5/21/2022
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Any major academic center doing organ transplants.
Answered 5/26/2022
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