Peutz-Jeghers Syndrome is a rare genetic disease characterized by the development of benign hamartomatous polyps in the gastrointestinal tract.
I hope you get this message. I just read your member bio and I relate to your experience. I was diagnosed in 1972 at age 16, though I'd already had polyp surgery in 1957. Since then I've had scopes for polyps plus cervical cancer, ovarian cystadenoma and breast cancer. Yes, it's all PJS, though the GI folks don't always tell us that. In 2000 I started an online support group for PJS people, that is free and supported by a wonderful nonprofit, Association of Cancer Online Resources (acor.org). Go there, click on p for PJS and subscribe to meet about 250 PJS people from around the world. Many members in Australia know the resources and meet up. I'm pretty busy with my health and that group, but do check messages here. You can also write to me at email@example.com TIA for your patience, I don't always respond quickly. healing hugs, Stephanie
Well, that's lousy about your daughter. I've had surgery for polyps and also breast cancer. Luckily I've lived a long time with PJS, even though it's sometimes been difficult. Several years ago I started on online support group for people with PJS and JPS through Association of Cancer Online Resources (acor.org). It's been a great source of support & information. I'm not sure about this rareshare "community", I joined so I could meet other PJS people. What about you? Is your daughter the only one with PJS in your family? I will keep her in my healing thoughts. – Stephanie
Hi Stephanie, I am the father of a 29 year old daughter who has Peutz-Jehgers. She was diagnosed in 2005 with the metatstatic colon cancer. Just in the last 2 months we have learned that the cause of her cancer was PJS. At this point all efforts to stop the spread of the disease have failed. She probably won't last much longer. I was wondering what your experience has been. Thanks Don
If you should find this message and wish to email about PJS, please write. thanks, Stephanie
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
I've had 4 laparotomies for bowel obstructions, benign ovarian tumour and breast cancer....twice.
It is only today that I found out...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.