When first diagnosed, the information coming from the doctors can seem overwhelming tosomeone not familiar with medical jargon and terminology. Websites providing information geared towards helping the layman understand medical information are important.
Saying it in Patient-Speak
Clinical Information
Clinical Trials
Mount Sinai Hospital, Toronto
Mount Sinai Hospital in Toronto, Canada, has a clear and brief description of PJS. Included in this information page is a general description of the syndrome, its discovery, and likely screening procedures.
Genetics Home Reference
A service of the U.S. National Library of Medicine, Genetics Home Reference has a page about Peutz-Jeghers Syndrome that is easy to understand. Links are given for terms that a reader may not understand. Additional resources are provided as well.
Updates on Topics Relating to PJS
Periodically, the list manager for the PJS Support Group will send out a letter to the group and to those who are not in the group. These letters are posted here as they are published.
MD Anderson Hereditary Colon Cancer Newsletter
One patient talks about her experiences, sharing with readers of the Hereditary Colon Cancer Newsletter in the Summer 2000 issue.
Johns Hopkins Guide for Patients and Families: Peutz-Jeghers Syndrome
This guide is available in electronic and print formats. Use it as a reference for yourself, and show it to your medical team.
Editor's Note: The Johns Hopkins Guide is a .pdf file. You will need Adobe Acrobat Reader to view it. For information on obtaining a hard copy by mail, click here.
The Network for Peutz Jeghers and Juvenile Polyposis Syndrome
Epigenetic maintains a small website for Peutz-Jeghers Syndrome, offering general information and names of clinicians interested in PJS.
NIH Office of Rare Diseases
PJS is considered an orphan disease because of how rare it is. NIH has an office geared towards orphan diseases, and maintains a vast library of information for patients.
MEDLINE Plus
MEDLINEplus has information written for the patient, giving links to additional information for terms that might be unfamiliar to the reader.
Cleveland Clinic
The Cleveland Clinic Department of Gastroenterology and Hepatology is running clinical trials with capsule endoscopy, and is looking for PJS patients. This study may be closed. Contact the Cleveland Clinic for details.
NIH Clinical Studies
The National Institutes for Health maintains a database of information on ongoing clinical studies patients can be involved in.
Email
Update: 6.Jan.'04