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Primary Sclerosing Cholangitis is not a widely known disease. Here's an overview of PSC and PSC Support's work to help journalists and other or media professionals. We’re more than happy to provide anecdotes, commentary or more details to support your research.

If we can help or you have questions please contact us.
 

What is PSC?

What are the symptoms?

What is the cause?

Is there a cure?

Who gets PSC?

What does PSC Support do?

How do we do this?

Want to know more?

 

What is PSC?

PSC is short for Primary Sclerosing Cholangitis, a chronic liver disease whereby the bile ducts become narrowed as scar tissue builds up, eventually blocking some parts completely. The  narrowed or blocked bile ducts interrupt the flow of bile out of the liver, causing a variety of symptoms; ultimately leading to biliary cirrhosis, portal hypertension, and liver failure in some patients.

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What are the symptoms?

Common symptoms can include tiredness, generalised aching, pruritus (itching), pain in the upper right side of the abdomen, jaundice, chills and fevers.  Many people with PSC are asymptomatic at the point of diagnosis, that is, don’t even show any outward symptoms to indicate they are living with a chronic illness. Not only that, but the progression of the disease is highly variable between patients: the speed of progression of PSC, severity and the number of symptoms cannot be predicted for the individual patient.

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What is the cause?

The simple answer is that no one knows for sure. PSC is definitely not caused by drinking alcohol.

Current evidence suggests it is a combination of genes, the immune system and some sort of trigger. People with a particular genetic make-up may be susceptible to particular toxic or infectious agents, which triggers their immune system to effectively ‘attack’ the bile ducts.

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Is there a cure?

There is currently no known curative treatment, or treatment which is known to slow the progression of the disease, but some of the symptoms can be managed. Liver transplant can be the only option for some people.

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Who gets PSC?

PSC occurs in twice as many men as women. The age at which most patients present is between 25 and 40 years, though the condition may be diagnosed at any age and has recently become recognized as an important cause of chronic liver disease in children.

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What does PSC Support do?

PSC Support is 100% run by volunteers, totally funded from charitable donations, and is dedicated to helping anyone affected by Primary Sclerosing Cholangitis. PSC Support provides information and support and promotes awareness of PSC, current research and the need for organ donation. PSC Support supports PSC research by providing research grants and connecting researchers with potential research participants.

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How do we do this?

We:

  • publish e-newsletters for our members and maintain a website containing details of the latest PSC research and developments, shared experiences from fellow PSCers, friends and family, fundraising activities, and information on our health and managing our symptoms.

  • arrange national meetings, in Oxford, Birmingham and London, giving members the opportunity to meet others affected by PSC and listen to the very latest research updates from leading PSC authorities.

  • provide support through online communities.

  • enable PSCers to talk to people who have been through similar experiences.

  • support UK PSC research, including the UK-PSC Study.

  • promote awareness and education about PSC to the medical community.

  • advocate for PSC patients to improve clinical care.

  • advocate for PSC patients regarding liver transplantation.

  • promote organ donation.

  • provide contact through local support groups.

  • provide research grants for high quality PSC research

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Want to know more?

Contact us

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