Caroli disèase

[user1476437421]

Hi, I've just been diagnosed with Caroli disease, is there any one else out there with this condition, I would be grateful for some advice. Thank you

Did you ever get any response to your post?
I just signed into Mumsnet on false pretenses, (wrong postcode, I'm in the US,) because i came across the reference to Caroli.
An infant in our family has just been diagnosed, her Mom is devastated, and the rest of us are just trying to learn a little more about it.
God bless