From the Editor…
The PRP Survival Guide began in November 2013 as a series of webpages posted on the PRP Alliance website. While the basic organization has remained the same, the content has relentlessly expanded to over 400 “articles”.
The primary target audience for the PRP Survival Guide has always been patients diagnosed with pityriasis rubra pilaris and their caregivers. The secondary audience includes families, friends, dermatologists and other healthcare professionals beyond the ranks of dermatology, e.g., general practitioners, ENT specialists, podiatrists, endocrinologists, mental health specialists, etc.
It is also hoped that PRP patients and caregivers new to the PRP Survival Guide will take advantage of a global PRP community eager to share their PRP-related experiences and insights. We recommend that you consider joining the PRP Facebook Support Group, CLOSED groups where we can all share with confidence and confidentiality.
Chapter 1 is an overview of the PRP Survival Guide divided into two parts:
✽ Part A: Understanding PRP
✽ Part B: Diagnosing PRP
These are the questions and topics asked by newly diagnosed PRP patients and their caregivers early in the PRP journey. This information may also be useful when explaining PRP to family and friends, co-workers and employers, teachers and school administrators, and so many more.
The PRP journey should not be undertaken alone. We travel as a group. A common goal and shared experiences. We are in this together.
Bill McCue, Editor
Part A: Understanding PRP
MUST READ The NORD PRP Report (circa 2017)
MUST READ The GARD PRP Report (circa 2017)
MUST READ PRP Glossary of Words, Terms & Jargon
MUST READ Is PRP contagious?
MUST READ What constitutes a rare disease?
National Organization of Rare Disorders >>> MOVE TO BASICS
Genetic and Rare Disease Information Center >>> Move to BASICS
Part B: Diagnosing PRP
✓ What are the symptoms and signs? (NORD PRP Report)
✓ What are the symptoms of PRP? — The Word Game
✓ Advocacy of Timely & Accurate Diagnoses
PRP and Skin Biopsies
PRP and Diagnosis Codes
Advocacy of Timely & Accurate Diagnoses
PRP Advocacy >>> Move to BASICS