Site Etiquette for Living With Sarcoidosis

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, and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are young people 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 laypeople. But this community 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 searched by Google. 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.

This community is supported by unpaid volunteer moderators who admit new members and monitor the public areas of the sites. 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.

There are occasional exceptions to the low profile that moderators and site owners like to keep. Moderators have administrative authority to warn, edit, delete, temporarily suspend, or permanently ban members who engage in any of the following kinds of behavior on the site:

SPAM: Unsolicited advertisements or messages 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 (such as GoFundMe) 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, or defamatory posts. 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 facts or opinions without engaging in personal attacks, punishing or angry written speech. We are here to share our journeys with others not as critics or judges, but as friends and co-participants. If you feel you must disagree with a position taken by another member, please try to remain courteous. Personal attacks will not be tolerated in either the public forums or by site email to individual members. If you receive such a message, please forward it to a moderator for corrective action. Likewise, please do not cross-post private messages to public discussions without the agreement of all participants.

Religious content or conversations of a religious nature: Because this is an international community, comprising people of many faiths and beliefs, we ask that members restrict their discussion and advice related to religion, to the Prayer and Healing Requests group. Others can be invited to join you there if they wish.

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 self-harm. Any discussion about therapies that are not yet proven in the context of mainstream medicine will be placed in the Complementary Therapies category, or may be removed. Patients in crisis will be referred to local medical resources or national telephone crisis hot lines for assistance. All site content, and assessment of unproven or dangerous claims is at the sole authority of the site moderators and owners.

Practitioner Reviews: We welcome and encourage personal comment or reviews of hospitals or doctors (by name, specialty and location) with whom you have had a positive experience or outcome. To keep our community supportive and positive, and due to fairness, legal and other concerns, we cannot support negative reviews of practitioners by name in the public forums of the site.

Rev June 20, 2017