Caroli Diease or Syndrome

[GregGentile]

My name is Greg am 55 years old and and have been diagnosed with Caroli Syndrome for over 10 years and have had cases of Cholangitis a couple of times a few years ago. I feel that I'm in stable condition and recently had a FibroScan with a score of 3.8 kPa. But very few people with this condition and would love to chat with someone that might have this condition or know someone who does.

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Hi Greg, Sorry to hear of your diagnosis but pleased to hear you have it under control and quite understand that you would like to talk to other people in a similar situation. CLDF is a children's charity and we support families who have a child with liver disease, therefore we are unable to advise you. However, you can get support from the British Liver Trust who support adults with liver related conditions by going to: britishlivertrust.org.uk.

Kind regards - Jacquie