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about psc (2)
Where patients have both of these conditions, it has been found that liver transplant has not been successful. This is because the immunosuppressant drugs used for such an operation allow the cancer to recur.
WHAT RESEARCH IS BEING UNDERTAKEN ?
Some research is being directed at investigating possible genetic origins of the disease, and their associations with inflammatory bowel diseases. Other research has involved studying the reasons why some people may develop cancer of the bile duct, and evidence indicates that there may be abnormal genes called tumour suppressor genes in the cells of the bile ducts. Investigations are also taking place to ascertain whether the progression of scarring in the bile ducts is due to the failure of scar tissue to break down normally.
IS PSC HEREDITARY ?
There may be a hereditary element. Although PSC is in the genes, there have been few known cases in the whole of world literature of persons in the same family having Colitis and PSC. It has been reported, but is remarkably rare. Although there is an increased risk of getting Colitis in families, there are people with PSC and Colitis whose siblings have Colitis but do not get PSC. Clearly, you need the right (or wrong !) genes and a trigger factor to start it off, to which one may never be exposed.
WHAT’S THE DIFFICULTY IN GIVING A PROGNOSIS FOR A PSC PATIENT?
PSC is a very difficult disease to predict. There have been four or five attempts to produce a diagnostic model. A model means that one can walk into a doctor’s surgery, give some particulars and a blood sample, and then be put on to a model to predict how one will do, in terms of liver disease, over the next 5, 10 or 15 years.
This can be done quite well with Primary Biliary Cirrhosis, but not with PSC, which is a very variable condition.
IF YOU WANT TO CHAT ......
One of a team of knowledgeable PSCers, Gerry Curran has kindly volunteered to lend an ear to your questions and concerns about Primary Sclerosing Cholangitis. You can contact him on 01243 670929. You can also talk to Andy Saunders (click for story) on 01494 440849, or Jim Mcgrath on 01543 257873. If you have to leave a number for a call-back, please ensure it is a land line number.
WHAT RESEARCH IS BEING UNDERTAKEN ?
Some research is being directed at investigating possible genetic origins of the disease, and their associations with inflammatory bowel diseases. Other research has involved studying the reasons why some people may develop cancer of the bile duct, and evidence indicates that there may be abnormal genes called tumour suppressor genes in the cells of the bile ducts. Investigations are also taking place to ascertain whether the progression of scarring in the bile ducts is due to the failure of scar tissue to break down normally.
IS PSC HEREDITARY ?
There may be a hereditary element. Although PSC is in the genes, there have been few known cases in the whole of world literature of persons in the same family having Colitis and PSC. It has been reported, but is remarkably rare. Although there is an increased risk of getting Colitis in families, there are people with PSC and Colitis whose siblings have Colitis but do not get PSC. Clearly, you need the right (or wrong !) genes and a trigger factor to start it off, to which one may never be exposed.
WHAT’S THE DIFFICULTY IN GIVING A PROGNOSIS FOR A PSC PATIENT?
PSC is a very difficult disease to predict. There have been four or five attempts to produce a diagnostic model. A model means that one can walk into a doctor’s surgery, give some particulars and a blood sample, and then be put on to a model to predict how one will do, in terms of liver disease, over the next 5, 10 or 15 years.
This can be done quite well with Primary Biliary Cirrhosis, but not with PSC, which is a very variable condition.
IF YOU WANT TO CHAT ......
One of a team of knowledgeable PSCers, Gerry Curran has kindly volunteered to lend an ear to your questions and concerns about Primary Sclerosing Cholangitis. You can contact him on 01243 670929. You can also talk to Andy Saunders (click for story) on 01494 440849, or Jim Mcgrath on 01543 257873. If you have to leave a number for a call-
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