The PJS & JPS (juvenile polyposis
syndrome) Online Support Group is thriving at https://www.smartpatients.com/communities/peutz-jeghers-syndrome
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.
