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?
MUST READ The history of our name (pityriasis rubra pilaris)
✓ What is PRP? (Multiple sources: DermNetNZ, Medscape, etc.)
✓ Why are PRP patient resources so hard to find?
✓ The Dowling Oration — What’s Missing?
✓ What were my odds of getting PRP?
✓ What is my long-term outlook based on Type?
✓ How do we track the worldwide PRP community?
National Organization of Rare Disorders >>> MOVE TO BASICS
✽ NORD PRP Report — Genesis
✽ NORD PRP Report — LINK
Genetic and Rare Disease Information Center >>> Move to BASICS
Part B: Diagnosing PRP
The Basics
✓ What are the symptoms and signs? (NORD PRP Report)
✓ What are the symptoms of PRP? — The Word Game
✓ How do PRP symptoms progress?
✓ Why is it so difficult to diagnose PRP?
✓ How can I be sure the diagnosis is correct?
✓ Is PRP an autoimmune disease? AARDA says “No”
✓ Is PRP autoinflammatory or autoimmune?
✓ Understanding autoinflammatory diseases (GARD)
✓ What are the variations “types” of PRP?
✓ How important is it for you to know your type?
✓ Advocacy of Timely & Accurate Diagnoses
juvenile onset >>> Move to diagnosis
PRP and Skin Biopsies
✓ What are the types of skin biopsies?
✓ What should the patient know about skin biopsies?
✓ What are the risks associated with a skin biopsy?
✓ What happens to the biopsy sample?
✓ What did we learn from the 2013 PRP Biopsy Poll?
✓ Overview of the 2013 PRP Biopsy Poll with Feedback
Misdiagnosing PRP
✓Are diagnostic errors common a common medical mistakes?
✓ What is the Iatrogenic effect?
✓ What are the life threatening aspects of a PRP misdiagnosis?
PRP and Diagnosis Codes
✓ ICD Coding for Rare Diseases from GARD
✓ Does your rare disease have a code?
✓ Were dermatologists ready for ICD-10?
✓ What is the ORPHA Number for PRP?
Advocacy of Timely & Accurate Diagnoses
✓ Advocacy Issues related to diagnosing PRP
RESOURCES
PRP Advocacy >>> Move to BASICS
PRP Alliance, Inc >>> Move to BASICS
PRP Community on RareConnect >>> Move to BASICS
PRP Facebook Support Group >>> Move to BASICS
PRP Global Database and 2019 Census >>> Move to BASICS
PRP Survival Guide >>> Move to BASICS