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.