Sunday, October 25, 2015

PJS Update October 2015

The PJS & JPS (juvenile polyposis syndrome) Online Support Group is thriving at
 Members from around the world gather for conversations on topics as diverse as bearing and raising affected children; removing at-risk organs and disfiguring spots; differing screening guidelines and living with these rare genetic syndromes. Please join us there. There’s no cost, it’s free of advertising and you can share as much or little personal information as you wish.

A new initiative – CurinGenetics:
The Mission of CurinGenetics is to help people affected by PJS and LKB1 gene mutations secure effective treatment and preventative measures for the elimination of polyp formation and reversing of LKB1 gene mutations. The ultimate goal is to have a world without Peutz Jeghers Syndrome (PJS) and LKB1 gene mutations, therefore lessening cancer risks for the benefit of millions of people affected.

My personal update:
If you’ve found this blog, you’ve found me, Stephanie Sugars. I’ve been living with PJS for a lifetime and with breast cancer for 25 years. For the past 15 years, I’ve been an activist for people with PJS and our carers (personal and professional). I feel such loving joy to have served our community. And, I’m turning toward my next adventure…death. If you wish to read my personal blog, you can use my name to search for it on the Internet.

Wishing all readers the best in health, well being and longevity.

Wednesday, August 12, 2015

2015 Boston and Houston PJS gatherings

In Houston, Texas USA on Saturday, August 22, 2015
If interested, please contact Casey at:

Near Boston, MA on Saturday September 26, 2015
If interested, please contact Renee Andrews at:

If you are interested in the New England Meet and Greet, but the date is not  convenient, please let Renee know and she'll start a list for a second event in the spring or fall of 2016.

Saturday, July 4, 2015

Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome News - July 2015

Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome News
Updated July 2015

Tuesday, May 19, 2015

Does the PJS affect the kidneys?

Just the sort of odd question I like. And one I've lived with it for years since hearing of a 30 y.o. man with PJS and kidney mass (probably a cyst, though I never learned the final pathology report).

Wednesday, April 15, 2015

The PJS gene and multiple sclerosis

The PJS gene and multiple sclerosis

Please don’t worry about getting multiple sclerosis (MS) because you have PJS!

Please read on if you're interested in the research linking the PJS gene (STK11) to MS.

Incidence of Thyroid Abnormalities in Peutz-Jeghers Syndrome

Dear PJS friends,

Many of us have reported thyroid abnormalities, including thyroid cancer, yet we’ve been offered no recommended thyroid screening guidelines. My earlier report is here

Dr. Stratakis and other researchers at the USA NIH – – have included PJS patients in their larger clinical study of those with familial lentiginosis syndromes.

The following report is about their 19 PJS patients (3 females, 16 males) who were evaluated for thyroid abnormalities by ultrasound. 14 or 73.7% had abnormalities. “hypoechoic regions (7), nodules (5), cysts (4), regions of inhomogenous tissue (1), hyperechoic regions (1), and calcifications (1).”

Sunday, March 8, 2015

Change! - Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group

The Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group has moved to:

Please join us there by clicking on the link and following instructions to join. If you aren’t ready to join, please bookmark the website for future use.

The new system should be easier to use, have more useful features and better tech support and insure a long-term future for our group.

Warmest healing wishes,
Stephanie Sugars

Thursday, January 8, 2015


I recently found and activated TRANSLATE for this blog. I hope it will help those who use languages other than English.

Please write to me at with any questions or responses.

very good healing wishes,
Stephanie Sugars