Story
Read below for condition details, but I'm doing this because support and understanding for this rare condition, that I've got, is low. The outcomes for many are pretty dire, there is no cure or slowing down progression and because the prevalence is low, research funding is limited.
I (selfishly maybe) want to raise money for a support group that i'm likely to need more in the future and who are putting money into research to slow or cure this disease.
I am one of the lucky ones at the moment, it affects my small bile ducts and so prognosis is good, but who knows what is around the corner.
Primary sclerosing cholangitis (PSC) is a rare and poorly understood immune-mediated disease of the bile ducts. Symptoms can be severe and unpredictable, sometimes progressing rapidly to end stage liver disease, requiring a liver transplant. People with PSC have increased chances of developing some cancers, including bile duct cancer and colon cancer. More than three quarters also live with inflammatory bowel disease. Even after a liver transplant, PSC returns in around 25% of patients.PSC patients have no way of slowing or stopping the progress of this devastating disease and desperately need a cure. Everyone giving to PSC Support will help fund groundbreaking PSC research, taking us closer and closer to an effective treatment. We'll also be able to support people affected by PSC through our online community, our helpline and our high quality medical and patient information about this complex and little-known disease.