Primary Sclerosing Cholangitis (PSC)

krs1958

I have the above rare liver condition. In my case because I have Inflammatory bowel disease.

Most medical professionals are unaware as it’s so rare. I was called to my GP the other week to discuss the results of a blood test I had a few days before.

The doctor was pleasant and said the blood test showed certain raised levels which suggested the increase in alcohol consumption. I explained that I had never consumed any alcohol since I was 21 years of age. She wanted to send me to the hospital because of this. I explained I had PSC and the results of the blood test were proof of this.

As luck would have it I had an appointment with the liver specialist the next day. He said the levels were consistent with someone with PSC.

At no stage was my GP unpleasant during the appointment but it goes to show how misunderstood PSC is among doctors.

PSC is so rare that in the USA they estimate 30000 with the disease. It is unpleasant and makes me feel very tired and ill a lot of the time. When I go yellow it’s a hospital admission and antibiotics.

I don’t tell anyone as a liver condition in some peoples eyes is linked to alcoholism.

Rachel_Scope

Hi @krs1958. It must be difficult explaining your condition when it is so rare. My husband also has a very rare condition and doctors don't really know what to do with him most of the time! I'm happy to hear that your GP was still pleasant despite not understanding your condition.

I hope you have found some support here and made some connections. If there is anything you need please let us know 😊