Liver Disease in Children

Lorna's story for Rare Disease Day 2014

Our little girl first showed signs of a problem with her liver as a six month old baby. Just after her first birthday she was diagnosed with a rare liver disease – Primary Sclerosing Cholangitis (PSC) as well as two other associated diseases.

There is no cure for PSC and treatment is limited. Immunosuppressant medication has failed to put it into remission. We are hoping to be able to try a medication that is helping children in the US.

In the meantime our little girl is a happy three year old. We do not think too much about the future. Liver transplants and re-occurrence of the disease in the new liver are too much to think about.

There are many rare liver diseases affecting babies and children and more research and awareness is so needed.

What is your story? Share with us your stories and help to build a community to assist those affected by rare diseases to feel less isolated.. Thank you!



  1. Hi,
    Sorry to hear about your illness and hope a solution is found soon.
    Do you mind me asking what the US drug is you’re trying to source?

    • It is Vancomycin, we have been on it for 18 months now and it is working 😊