Fam Cancer. 2011 Sep;10(3):473-9. doi: 10.1007/s10689-011-9453-y.
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.
患有 Peutz-Jeghers 综合征（PJS）的生活是复杂且要求很高的，不仅会影响患者，还会影响其家庭成员、亲人以及临床医生。通常，临床医生和研究人员已经对该综合征进行了定义。现在，除了临床医生和研究人员，PJS 患者及其护理人员也会利用互联网进行医学研究，并寻找其他可以分享信息和支持的人。自 2000 年以来，一个针对 PJS 患者的在线支持小组已经成为一个重要的资源。本文旨在通过分享该小组获得的知识以及作者作为 PJS 患者的个人经验，来补充医学文献和临床医生的实践。临床医生和研究人员可能会受益于对该综合征更全面的了解、一长串的问题和要点，以及未来研究和临床实践的建议。本文旨在减轻痛苦并改善未来的患者护理。
