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Juvenile Polyposis Syndrome is diagnosed when ten or more hamartomas are found in the intestines of a child. This can occur sporadically, when the child's parents don't have the syndrome, or as an autosomal dominant trait, when at least one parent does have the syndrome. Autosomal dominant refers to the fact that the gene is inherited whether the person is female or male and that only one copy of the gene is necessary for the person to have the syndrome. Regardless of how the child gets JP, in the future their own children will each have a 50/50 chance of getting JP.
There seems to be some discussion on whether the polyps really pose a lot of cancer risk. Some information sees a strong risk if the polyps are not removed on a regular basis. Other information seems to say that the polyps will not become cancerous at all. Regardless, regular scopes and tests are necessary because the polyps can cause problems when they become too large. Just like with any syndrome, the severity of symptoms varies from person to person.
Below are links to information specifically for Juvenile Polyposis Syndrome. If you need any further help, use the email link at the bottom of the page. We will be glad to help in any way we can.
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The Cleveland Clinic offers a good page that describes JP in clear terms and offers suggestions for treatment and management.
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The University of Iowa Hospitals & Clinics offers technical information on familial JP. While the technical descriptions might be difficult for most people, the clear pictures on the page are worth looking at.
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Mount Sinai Hospital of Toronto, Canada, offers a patient-friendly overview of JP as part of their Familial Gastrointestinal Cancer Registry.
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Johns Hopkins University's OMIM site has a detailed description of JP with sources listed at the bottom. The wording is very technical, but useful for medical professionals. The page was last edited in April 2004.
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A resource funded by the NIH, Gene Reviews offers a comprehensive page on Juvenile Polyposis Syndrome. Defined terms in the text display in a different color and link to a fuller description of the term. This page was last revised in May 2004. They do have a printable version set up to be printer-friendly.
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This very detailed page from The Doctor's Doctor is intended for healthcare professionals. The author(s) mention that recent work by pathologists suggest that juvenile polyps, aka hamartomas, have the potential to become malignant. It may be wise to print out this particular page to discuss with your doctors.
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PersonalMD posted a Reuters news article based on a 1998 journal article. The article, Juvenile Polyposis Gene Discovered focuses on familial juvenile polyposis and its genetic cause.
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The Virtual Children's Hospital has a section devoted to Juvenile Polyposis, presented as a guide for patients and their families. They offer many different topics to explore. Bear in mind that the last revision date on the site is April 2002. There is much valid information, but there may be more current information elsewhere.