When we are diagnosed with PBC we are not given any care for months. Too many people are sent away not knowing what they have. It is paramount to our health to avoid stress and worry yet imediately after diagnosis we are left for months thinking the worst.

When diagnosed we need to have proper information and explanation of self care and prognosis, a QandA session wuth soneone knowledgeable of PBC and regular after care and support.

I have PBC. When i was diagnosed i thought i would get better because i wasn't given any information. I did my own research and felt I'd been given a death sentence. I didn't kniw where to get correct information. Three years later and I am awaiting transplant. I had to create my own online support group because there was insufficient advise and support.

Far too many people share my experience and suffer through lack of support and information. We are a minority of approximately 20,000 sufferers yet just one suffering due to lack of support is too many.

This is an area that needs addressing imediately.