Important information for people who also have PSC

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Several questions
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 10/13/2008 12:45 PM (GMT -6)   

Here are some excellent sites to help people with PSC.

psc-support.com  This is a support group that you need to register for since they only want people on the site if they have psc or are close to someone with psc.  I remember thinking it was tough to figure out how to register but hopefully you can figure it out.  You end up registering with yahoo and then waiting to get permission from the psc site. It takes a day or two but is well worth the wait because the people on the site are very knowledgable.

 

pscpartners.org  These are many of the same people working hard to seek a cure for psc. They are raising funds for research. Scientists apply to them for money to do research on psc. They have an excellent newsletter so it is well worth clicking on "newsletters".  I just skimmed their fall newsletter and I plan to print it off because it is so helpful.

psc-literature.org   This is a site that compiles all the literature for the research being done on psc.  It has been started by a "scientist" dad of a son with psc and he is really working hard at bringing the information together and trying to make sense of it.

Many of the same people are involved with all three sites. 

If you know someone with psc, please direct them to these helpful sites.  (psc is rare but many people with psc also have ulcerative colitis) 

Sandy


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/13/2008 1:02 PM (GMT -6)   
Thanks Sandy. Still hoping i don't have it, but playing the waiting game. If my blood comes back negative then i should be in the clear and ill be breathing just a bit better :).

I just am hoping bile ducts can get inflamed out of no where!! Or at least without it potentially being PSC.

Vin
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

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