My earlier patient-view reports

My earlier patient-view reports

Since 2000 I’ve been writing about Peutz-Jeghers syndrome for the PJS Online Support Group. My reports have included updates on medical journal articles, resources and explorations of topics of interest to people with PJS, their loved ones and health care providers.

Several of these reports are available at http://peutz-jeghers.com/artrep.html

Peutz-jeghers.com is a wonderful resource created by Karen Oyler. It is of, for, by and about Peutz-Jeghers people & our gene (LKB1/STK11).

Unfortunately the information explosion has made it impossible to keep that website up-to-date.

This blog will hopefully serve as a news source for folks interested in PJS and the PJS gene (LKB1/STK11).

Rather than republish my earlier reports here, I will direct you to http://peutz-jeghers.com/artrep.html

Síndrome de Peutz-Jeghers - PJS en Espanol

Síndrome de Peutz-Jeghers

Adhesions - internal scar tissue

This report is from October 2001. - Stephanie

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Well, this report from a patient view is a little more grisly than usual. I'll apologize in advance and warn away the squeamish.

I assume that readers are familiar with small bowel obstruction due to polyps. List members have given many reports of polyps causing blockage and/or intussusception. But, in the general population, surgical adhesions are a far more common cause of small bowel obstruction. Because many list members have had abdominal surgery (laparotomy and laparoscopy), we are at risk for obstruction from both polyps and surgical adhesions.

PJS Meet & Greet

OUTDATED!

FOR ARCHIVE ONLY!

My friend Casey is working on the 2010 PJS Meet & Greet to take place June 26 in Northern California. Mark your calendars and follow her blog at http://pjsmeetandgreet.blogspot.com/

How to Have a PJS Free Baby

How to Have a PJS Free Baby
Stephanie Sugars
December 2008

The question about how to have a PJS-free baby came from people with PJS living in China, but my answer will help others around the world. I've been studying for months and have many resources. I will simplify the steps in this original email and give explanations, thoughts and references in future emails.

Remember, I'm a patient not a medical professional. This isn't medical (or ethical) advice! But it is a patient-view report. My goal is to address questions of people with PJS including potential parents.

Here's a recipe for a PJS-baby, using current techniques (in vitro fertilization and preimplantation genetic diagnosis):

NCCN PJS Screening guidelines

You'll need to get your own copy of this article to follow this post. You'll need to register at NCCN (National Comprehensive Cancer Network) or Medscape. It's free and two of 69 pages are devoted to PJS. It would be a great resource to share with your doctor or genetic counselor.

Peutz-Jeghers Syndrome News

OUTDATED!

FOR ARCHIVE ONLY!