Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Actually, there is a fair amount of evidence that PSC is a LOT more common - just no symptoms. From message 65133: Here's a quote from Dr. Chapman from the PS.C. U.K. Support group web site: http://www..demon.co.uk/page7.html " A recent study in the US, the Minnesota study has shown that PSC is much more common than we thought, 200 per million. (This would give a figure approaching 40,000 in the US .... " Of these 40,000 about 70% [~ 28,000] will have inflammatory bowel disease (mostly ulcerative colitis, some Crohn's), leaving about 30% [~12,000] with PSC alone. The study from which these numbers are derived is: Bambha K, Kim WR, Talwalkar J, Torgerson H, Benson JT, Therneau TM, Loftus EV Jr, Yawn BP, Dickson ER, Melton LJ 3rd 2003 Incidence, clinical spectrum, and outcomes of primary sclerosing cholangitis in a United States community. Gastroenterology 125: 1364-1369. PMID: 14598252. These are very high numbers and it's not clear to me why we don't have a larger membership if this is true. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota From: [mailto: ] On Behalf Of Barb Henshaw ....I'm frankly tired of always reading " it's a rare disease " - it isn't rare to my son or this group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Actually, there is a fair amount of evidence that PSC is a LOT more common - just no symptoms. From message 65133: Here's a quote from Dr. Chapman from the PS.C. U.K. Support group web site: http://www..demon.co.uk/page7.html " A recent study in the US, the Minnesota study has shown that PSC is much more common than we thought, 200 per million. (This would give a figure approaching 40,000 in the US .... " Of these 40,000 about 70% [~ 28,000] will have inflammatory bowel disease (mostly ulcerative colitis, some Crohn's), leaving about 30% [~12,000] with PSC alone. The study from which these numbers are derived is: Bambha K, Kim WR, Talwalkar J, Torgerson H, Benson JT, Therneau TM, Loftus EV Jr, Yawn BP, Dickson ER, Melton LJ 3rd 2003 Incidence, clinical spectrum, and outcomes of primary sclerosing cholangitis in a United States community. Gastroenterology 125: 1364-1369. PMID: 14598252. These are very high numbers and it's not clear to me why we don't have a larger membership if this is true. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota From: [mailto: ] On Behalf Of Barb Henshaw ....I'm frankly tired of always reading " it's a rare disease " - it isn't rare to my son or this group! Quote Link to comment Share on other sites More sharing options...
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