Do you or someone you know have PSC? (primary sclerosing colangitis) Some info/insight would be great!?

Question

My mother just got diagnosed with this after having a stricture removed and other liver related problems. She also has IBS and colitis which i believe are par for the course as far as correlation. How has this affected you or someone you know? Is it pretty easy to get on with your life or are you always worried about cancer and liver transplants? Any and as much info as you can spare would be greatly appreciated. thanks!

Answer 1

Yes, I have PSC

We have a support group at

www.psc-support.com

our information data base is at:

www.psc-literature.org

Please join our group of warm and knowledgable people who will try to answer all the questions you may have. We will be glad to help you in any way we can.

IBS and UC are indeed the norm for PSC patients. PSC affects everyone differently. Most people will get symptoms (jaundice, pruritus, up to liver failure sooner or later, some don't for thirty years or more.

It took me about a year to get back to normal life. I decided to take better care of myself, I eat healthier, I sport more and I live my life as if every day is my last. I do worry about liver transplant and CCA but there is not much I can do to prevent it apart from the before mentioned changes in life style.

Chaim Boermeester, Israel