Help make the treatment a cure.
For most people, the first time they hear of Primary Sclerosing Cholangitis is when they or their child is diagnosed. PSC is a rare disease of the bile ducts of unknown origin that follows an uncertain course. It seems to come out of nowhere and dramatically changes one’s life for the worse, particularly if one is a child—and a quarter of all new cases are children.

In the first stage of PSC there are no symptoms other than changes in the levels of certain liver enzymes. PSC can go undetected for several years and, if noticed, is often misdiagnosed. In the second stage, gradual inflammation and blocking of the bile ducts causes worsening illness and exhaustion. The final stage is marked by severe illness and liver failure — requiring a liver transplant.

The mean survival rate of children (and adults) with PSC without transplant is about 12 years from diagnosis. Even with a transplant, PSC frequently reoccurs, and the cycle repeats. More than half of all children with PSC also have Ulcerative Colitis and/or Crohn’s disease, and it is usually by blood tests or endoscopy of patients with these illnesses that PSC is first discovered.

Most patients, their parents, doctors and specialists, throughout the world, are under the impression that liver transplantation is the only treatment for PSC. There is always a shortage of healthy livers and, while waiting for a transplant, children endure years of ill health and sickness, often missing out on much of their child or young adulthoods.

Part of the mission of the Children’s PSC Foundation is to let the world know that oral vancomycin is a long-term treatment for PSC—not one that eliminates the disease, but that eliminates its symptoms and stops its progression. The other part of the Foundation’s mission is to turn that treatment into a permanent cure, through on-going support of research.

The Children’s PSC Foundation is dedicated to funding promising scientific research in pursuit of this cure and to bringing hope to the many children suffering with PSC.

We welcome you on our journey towards the cure, and thank you for supporting us in our endeavors.