This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices "should" be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But Living with Narcolepsy is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
Visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. Thus your speech here should be considered "public". If you're tempted to write something about another person that you wouldn't say to their face, then we counsel you to think first. Speech can be consequential.
Living with Narcolepsy is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and Blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community who may be well-informed about the state of medicine and research.
Rules of the Community
There are occasional exceptions to the low profile that moderators and site owners like to keep. Moderators have administrative authority to warn, edit, temporarily suspend, or permanently ban members who engage in any of the following kinds of behavior, either in posted discussion or in the chat room:
SPAM: unsolicited advertisements or general broadcast messages which are off-topic to the mission of the community or otherwise intended to generate financial gain for the poster or others. Physician self-advertisement or patient solicitation will be treated as SPAM. Regrettably, we must also treat fund raising or solicitations by members on their own behalf, in the same way.
Members should report to the moderators, any site email inviting them to correspond with another member off-site, especially concerning undefined or "urgent" topics. We are becoming large enough to be a target for spammers and scammers, and we've had to ban a few from soliciting for scams.
Offensive Content: profanity, pornographic text or images, sexually or racially-charged references, advocacy or facilitation of illegal activity including the abuse of psycho-active drugs. If you wouldn't say it in front of your neighbor's ten year old child, then please don't write it here.
Personal Attacks on Members: honest people may disagree on fact or opinion, without engaging in personal attacks, punishing or angry written speech. We are here to share our journeys with others of like mind -- not as critics or judges, but as friends and co-participants. If you feel you must disagree with a position taken by another member, then try to remain courteous. Character assassination or harassment will not be tolerated in either the public forums or by site email to individual members. If you receive such mail, please forward it to a moderator for corrective action. Likewise, please do not cross-post private emails to public discussions without the agreement of all participants.
Medically Dangerous or Negligent Information: Postings may be removed if they advocate for unproven or dangerous therapies, medically unsupervised withdrawal from medication, or which threaten or encourage suicide. Patients in crisis will be referred to local medical resources or national telephone crisis hot lines for assistance. Assessment of unproven or dangerous claims is at the sole authority of the site moderators and owners. The principle here is an old and honorable one: when you pay for the football, you get to set the rules.
Practitioner Reviews: We welcome and encourage personal comment or reviews of hospitals or doctors by name, specialty and area of the world, with whom you have had a positive experience or outcome. Due to fairness, legal and advertising concerns we cannot support negative reviews of practitioners by name in the public forums of the site. It is profoundly unfair and possibly slanderous to publicly condemn a doctor as an incompetent on the basis of a single experience, even if it's yours. Likewise, the site is partially supported by advertising fees, and advertisers tend to disassociate themselves from controversy.