Peutz-Jeghers syndrome: a patient’s view
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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.
KeywordsPeutz-Jeghers syndrome Online support group Patient narrative Genetic counseling e-Patients LKB1/STK11
For all those affected by PJS—the dead, living and yet-to-be-born. And those who care—personal, professional, and practical—enriches our lives.
- 1.Peutz-Jeghers syndrome & Juvenile Polyposis Syndrome Online Support Group http://listserv.acor.org/archives/pjs.html
- 2.Patient-view reports http://www.peutz-jeghers.com/artrep.html
- 3.Peutz-Jeghers News Blog http://peutz-jeghersnews.blogspot.com/
- 4.Empowered Patients: How they can help us heal healthcare by Tom Ferguson, MD http://e-patients.net/e-Patients_White_Paper.pdf
- 5.Radio Interview about the PJS Online Support Group http://pushinglimitsradio.blogspot.com/2010_04_01_archive.html at 11 minutes
- 6.Cure Magazine Interview Spring (2010) Finding meaning and purpose http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1441
- 7.Peutz-Jeghers syndrome Meet & Greet www.pjsmeetandgreet.blogspot.com
- 8.Peutz-Jeghers syndrome website www.peutz-jeghers.com/
- 10.Sindrome de Peutz-Jeghers en Espanol firstname.lastname@example.org http://groups.google.es/group/sindromedepeutzjeghers?hl=es
- 11.Peutz-Jeghers syndrome in China email@example.comGoogle Scholar
- 12.Heath, Iona. “Uncertain clarity”: contradiction, meaning, and hope. British Journal of General Practice. Aug 1999. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1316209/pdf/brjgenprac004944500651.pdf