caa a22 4500 445330813 CHVBK 20180317142736.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s10689-011-9453-y doi (NATIONALLICENCE)springer-10.1007/s10689-011-9453-y Sugars Stephanie Peutz-Jeghers Syndrome Online Support Group aut Peutz-Jeghers syndrome: a patient's view [Elektronische Daten] [Stephanie Sugars] Life with Peutz-Jeghers syndrome (PJS) is complex and demanding, affecting not only the patients, but also their family members, loved ones, and clinicians. In general, clinicians and researchers have defined the syndrome. Now, in addition, people with PJS and their caregivers use the Internet for medical research and to find others with whom to share information and support. An online support group for people interested in PJS has been an important resource since 2000. This article is meant to complement the medical literature and clinician practice by sharing knowledge gained from this group and through the author's personal experience as a PJS patient. Clinicians and researchers may benefit from a better-rounded view of the syndrome, a long list of questions and issues, and tips for future research and clinical practice. This is offered with the intent to ease suffering and improve future patient care. Springer Science+Business Media B.V., 2011 Peutz-Jeghers syndrome nationallicence Online support group nationallicence Patient narrative nationallicence Genetic counseling nationallicence e-Patients nationallicence LKB1/STK11 nationallicence Familial Cancer Springer Netherlands 10/3(2011-09-01), 473-479 1389-9600 10:3<473 2011 10 10689 https://doi.org/10.1007/s10689-011-9453-y text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s10689-011-9453-y text/html Onlinezugriff via DOI NATIONALLICENCE 100 1- Sugars Stephanie Peutz-Jeghers Syndrome Online Support Group aut NATIONALLICENCE 773 0- Familial Cancer Springer Netherlands 10/3(2011-09-01), 473-479 1389-9600 10:3<473 2011 10 10689 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer