Some european remarks to the how long have we got discussion

[Guest guest]

Hello for everybody,

I still wanted to make couple of remarks on this topic. Reason is, that there

still seems to

be cases, where people newly dx:d get that impression from their doctors, that

something

like 10 years is a median prognosis for psc. That obviously is not the case.

According a dutch study from 2002 (link below) the median prognosis seemed to be

12

years earlier, but would based on their study rather be 18 years. A german

support page

for UC and connected diseases (www.dccv.de, subpage AK-PSC) points out, that the

patients participating the study come from universal hospitalities, which means,

that they

usually had a disease, which allready had progressed quite far compaired to the

whole psc

patient population. Neither have all the patients in this dutch study (it

included patients

from as far as 1970) yet been able to fully benefit from the latest therapies

like UDCA and

ercp-dilatation of dominant strictures. So on this german page they think, that

the median

transplant free prognosis for patients dx:d today can easily be clearly higher

then 18

years.

We know, that the disease sometimes developes faster, sometimes slower. The

median

prognosis indeed is an average. That means, that in the one end of the patient

population

there can be psc-ers, who will have a disease history of decades before

transplant.

In light of this I would give a strong vote for Barb's line " PSC – time to

death or transplant

– undetermined! " and point out, that with a diagnosis of psc one can have

decades of good

quality life coming.

And with the current research and developement in medicines everybody with this

disease,

-even in the critical phases- will get help, which gets better and better all

the time.

I wish evereybody all the best.

, UC & small duct psc 83, large duct psc 97