The goal of this book is to give parents of children with PFFD and those with PFFD a guide so that they can plan ahead and prepare for events that they may encounter. The idea is to create an organization as a time-series - similar to good books like "What to expect when you are expecting" and "What to expect the toddler years."
This has been built up from the page written by Mike Malloy in "A Parent's Guide to PFFD" (archived here) now re-organized into this collaborative book format. As he put it when he first wrote the guide
Disclaimer: The author of this document is not a doctor. I am just a parent of a child with PFFD who is very frustrated by all the hard to understand medical papers about PFFD. This document is my attempt at trying to describe PFFD in easy to understand terms. By no means is it to be considered medical advice. All the PFFD experts will tell you that each case is different and needs to be judged on it's own merits. Please consult a doctor for the best advice.
Even though Mike wrote the guide as a parent of a child with PFFD - the information was well written and well documented. Its a good model to maintain. Other PFFD.org members are encouraged to create their own chapters or add to existing pages - please note that this is a collaborative effort and so good communication among the PFFD community will help this project immensely. If you see something that you believe to be a factual error or see text you would like changed - it is good etiquette to contact the author before modification.
Links to following pages are at the bottom of each page.
You can click "next" to read each page in order or skip to subsections by following the highlighted titles/links.