PSC Awareness Week: Call for PSC patients to sign registry

22 June 2015

PSC Awareness Week

A PSC charity is calling for patients to stand up and be counted by signing up to a registry – which will play a fundamental role in finding a cure for the condition.

What is PSC?

Primary Sclerosing Cholangitis (PSC) is a rare chronic liver disease in which the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring.

The disease may present on its own but is often associated with inflammatory diseases of the colon, particularly chronic ulcerative colitis.

According to PSC Support, it occurs in twice as many men as women. Patients are usually diagnosed between ages 25 and 40, though the condition may present at any age and has recently become recognised as an important cause of chronic liver disease in children.

What are the symptoms?

PSC can be symptomless and the disease is often only discovered because of abnormal results of routine blood tests in patients with ulcerative colitis of Crohn’s disease. Most people have few or no symptoms for many years.

Common early symptoms are:

  • tiredness
  • some abdominal discomfort in the right upper abdomen.

Late symptoms are:

  • itching
  • jaundice – yellowing of the skin and whites of the eyes
  • episodes of fever, shaking and chills can be distressing but are uncommon.

Liver failure may ultimately develop.

There is currently no treatment for PSC

Thousands of patients are needed to participate in trials, but PSC is rare. Before pharmaceutical companies and funding bodies invest in a potential drug, they want to be reassured that there are enough willing patients around.

That’s why PSC Partners Seeking a Cure has set up the first global PSC patient registry. This patient registry is a database of PSC patients who want to stand up and be counted. The PSC Partners Registry will play a fundamental role in finding a cure for PSC.

If you are living with PSC, please click here to sign the registry.


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