How to use the site

First -- register.  You can see more content, find other users more easily and can make comments in addition to creating your own folder if you are a registrant. 

Please address specific site-related questions to the Administrator via the Contact -- open questions for other parents or patients, the scientific or the medical community should be posted in folders where users or browsers can find them. Create a folder, add a page and post a case and pose questions in the text to the community at large.

Make sure you allow comments to be added to your pages. After posting a case and changing it from private to public, click on Edit, go to the Settings tab, and click on the box next to Add Comments.  This allows others to comment on your posting.

The Search function, especially Advanced Search, is a powerful way to see what new postings or changes have been made to the site. Click on Search, find Advanced Search, click on that and filter your search as desired. All text is indexed as well.

To find a list of Users, log in, go to the Home page, click on Contents tab, and click on Users.

This is the site where you can tell the most important story you know.   Our primary mission is to encourage parents and patients and physicians to describe for the other users of the site a case that needs some help.  The site allows users to broadcast their situation to a community of users that have knowledge and in some cases their own issues.  The site enables that sharing.  The first step is to describe the affected person (the case) in the most specific terms, ideally telling the story in chronological order.  The result of any tests should be provided.  Pictures can be very helpful especially if the findings are difficult to describe.  What medicines have they taken?  What have doctors called the condition?  What are the different diagnoses that have been given (even if they turned out to be wrong)?  I have provided an example of a case written in two ways – one that doctors would understand and one that any person could understand.  They say essentially the same thing.  I expect users to enter one or the other type of description, only rarely both. 

Whether you are a physician, patient or parent, do not feel your initial case posting needs to be definitive, perfect, or complete.  This site can be edited by the user and updated as necessary.  In any event, all stories will unfold and this is as convenient a place as any to keep the story fresh.

We recognize that most findings in medicine have more than one name.  A runny nose to some is rhinorrhea to others is a stuffy nose is nasal congestion, etc.  When more than one term comes to mind it may be best to use them all because they will be indexed by this site allowing users to search on many terms and find the case.

There is a fundamental question: Is the condition genetic?  An approach to that question is addressed on another page.