Hyperplastic Polyposis Syndrome

I am a 45 year old woman living in Australia who has just been diagnosed with Hyperplastic Polyposis Syndrome. Although I am a Nurse I am finding it very difficult to find out any information about this syndrome, as I have been told that it is extremely rare. Apparently the risk of colon cancer with this is thought to be double, but not really known as there is not much research into it at the moment. I would appreciate any info that anyone out there has, as to this syndrome and my possible risk of colon cancer. I actually met the only other person in Australia who has been diagnosed with this syndrome last week, and he told me that only 5 other people in the world have been diagnosed with this, which I find very hard to believe....but who knows?
Replies would be greatly appreciated....thankyou.

[eloridas]

Hi, I'm not a doc/nurse and do not know about your syndrome--but know what it is like to have something rare--I did a search for you and here is the website for the information below.  http://www.hci.utah.edu/5097.html  They are doing a study--which makes it easier to get more up to date information:

The Registry is a member of the international Leeds-Castle Polyposis Group and the Collaborative Group of the Americas on Inherited Colorectal Cancer:

The Familial Colon Cancer Registry
Huntsman Cancer Institute
University of Utah
2000 Circle of Hope
Salt Lake City UT 84112

Telephone: [phone]
Toll free: 877-422-6860

Hope this helps you!!  God Bless!!

[eloridas]

Hi, I'm not a doc/nurse and do not know about your syndrome--but know what it is like to have something rare--I did a search for you and here is the website for the information below.  http://www.hci.utah.edu/5097.html  They are doing a study--which makes it easier to get more up to date information:

The Registry is a member of the international Leeds-Castle Polyposis Group and the Collaborative Group of the Americas on Inherited Colorectal Cancer:

The Familial Colon Cancer Registry
Huntsman Cancer Institute
University of Utah
2000 Circle of Hope
Salt Lake City UT 84112

Telephone: [phone]
Toll free: 877-422-6860

Hope this helps you!!  God Bless!!