Re: to Chaim re figures.

[Guest guest]

Chaim,

I don't have a study at my fingertips which I can refer to. The 80% figure comes from a presentation given by Prof. at the 2006 London PSC Conference. And you're right - they don't correlate with other figures elsewhere. This is one of our problems - and that's why the Foundation's efforts to build a database from the experience of a number of liver units is so important.

We are bedevilled in all directions by this lack of reliable comparative data. There's the case of the recent discussion on the rate of recurrence amongst PSC transplantees which has been thought to be around 30% - yet the University of Birmingham Medical School, UK, comes out with a figure of 60% and we're told it all depends on how rPSC is defined.

Until recently the figure for the average length of time from diagnosis to Ltx or death was given as 10 years. A reason why so many of us panic when first diagnosed. Slowly that figure has risen towards 17 years - mainly under the influence of Scandinavian data. We're dealing with averages and who is average? You may not be in the central tendency of the median. You probably aren't. There are all kinds of problems and unknowns here. The time of diagnosis is completely arbitrary and it obviously doesn't mean the disease started at that point. Many of us are diagnosed by chance when blood tests are taken for some other purpose. This was my own case and I was already found to be at stage 3 of PSC which means that I had had it for many years before dx. It's gone into stage 4 - with cirrhosis - but if I wouldn't have ERCPs and Ultrasounds I still wouldn't know that I have it. In general there are a lot of people walking around who have liver disease and don't know it. It's quite common for it to be found on autopsy that a person had liver disease, possibly PSC - without the deceased ever knowing it.

Ivor

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