Table of Contents

Editor’s Note…

If this is your FIRST visit to the PRP Survival Guide, please read How to Use the PRP Survival Guide before linking to any of the chapters listed below. The best place to start is with Chapter 1.

The PRP Survival Guide is divided into six CHAPTERS.          

Chapter 1 — Understanding PRP  
These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers,family and friends, co-workers and employers, teachers and school administrators, and so many more.         

Chapter 2 — Treating PRP 
The focus here is on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in the journey that treatment is a roll of the dice — what works for one doesn’t work for all. We also learn that not all dermatologists are PRP savvy.

Chapter 3 — Living with PRP 
Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. Feedback by hundreds of fellow travelers who have shared their insights based on their unique journeys with posts and comments as members of the PRP Facebook and RareConnect communities.                  

Chapter 4 — PRP and Remission 
For most PRP patients and caregivers, the outcome we seek is remission. For others, the PRP journey is defined by long-term management of symptoms rather than remission.       

Chapter 5 — PRP Research 
The PRP community has long lamented the lack of research. Since October 2012, however, researchers at Thomas Jefferson University have been conducting ongoing genetic and clinical research. During the past few years Yale University, Oregon Health & Science University and a joint effort involving UCLA, USC and Kaiser Permanente given us hope.       

Chapter 6 — PRP Advocacy 
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP?

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DISCLAIMER The PRP Survival Guide is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information to better understand and manage the burden of pityriasis rubra pilaris on body, mind and spirit. No individual should indulge in self-diagnosis or embark upon any course of medical treatment that is described in the PRP Survival Guide without first consulting a health care professional.