Chapter 1 — PRP Basics INDEX


 The PRP Survival Guide began in November 2013 as a series of webpages included on the PRP Alliance website. While the basic organization has remained the same, the content has relentlessly expanded to over 400 “articles” representing thousands of pages. 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 and healthcare professionals beyond the ranks of dermatology, e.g., general practitioners, ENT specialists, podiatrists, endocrinologists, mental health specialists, etc. It is also hoped that both PRP patients and their caregivers will share their PRP-related experiences and insights using the Leave-a-Reply feature at the end of each webpage to help us all better understand our disease.

Bill McCue — Editor


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.

Understanding PRP — Chapter 1

 The NORD PRP Report (circa 2017)  PDF download
 The GARD PRP Report (circa 2017)  PDF download
★  A Review on PRP (Amer Journal of Derm; Jan 04, 2018)
✓  What is PRP? (Multiple sources: DermNetNZ, Medscape, etc.)
✓  The history of our name (pityriasis rubra pilaris)
✓  Do we know what causes PRP?
 Is PRP contagious?
✓  What constitutes a rare disease?
✓  How rare is pityriasis rubra pilaris?
✓  What were my odds of getting PRP?
✓  How do we track the worldwide PRP community

Diagnosing PRP — Chapter 2

 How is PRP diagnosed?
 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?

Treating PRP — Chapter 3

 What are the standard therapies? (NORD PRP Report)
 What are the treatment options for PRP?
 How bad is my version of PRP going to get?
 How to find PRP-savvy dermatologist?

Daily Life with PRP — Chapter 4

✓ What are the challenges of living with PRP?

PRP Parents and Kids — Chapter 5 (under construction)

What are the challenges facing PRP parents? (pending)

PRP and Remission — Chapter 6

 What is my long-term outlook based on Type?
 What is the definition of remission?

PRP Research — Chapter7

 Thomas Jefferson University
 Yale University School of Medicine

PRP Advocacy — Chapter 8

 What are the opportunities for PRP advocacy?

Chapter 1 — The Basics INDEX A00

How to Use the PRP Survival Guide

From the Editor

I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead. 

Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris. 

That evening I performed a series of internet searches and devoured  two dozen healthcare-related websites. Unfortunately, the information I uncovered was limited in scope and redundant in content. Even more disconcerting, however, was the presumption that I was familiar with medical terms. Arrgh! 

Sometime during the early morning hours of November 29, as I became overwhelmed by my ignorance, I knew I needed to find a PRP Survival Guide. 

When I discovered that there wasn’t one, I started writing it. Three years ago — May 20, 2015 — the PRP Survival Guide was officially introduced to the worldwide PRP community.

SEARCHING THE INTERNET

The PRP Survival Guide is offered as an alternative to unstructured and random forays using Dr. Google and Dr. Yahoo. These efforts will almost always lead to frustration and frequently to misinformation. If we do are job properly, you will either (1) find the answers you seek or (2) send the PRP Survival Guide out in search of those answers. Learn more about using Dr. Google.

SEARCHING THE PRP SURVIVAL GUIDE

Please use the SEARCH field to locate questions, chapters and topics.  Each post in the PRP Survival Guide has been assigned a unique alpha-numeric identification. Enter prp00 and this “How to Use…” post appears. The locator number follows every post.

TRANSLATE FEATURE

Every page in the PRP Survival Guide has a TRANSLATE button powered by Google Translate. The pull-down menu offers 100 language options. The translation applies to the post/page as well as any replies that follow.

ORGANIZATION

The PRP Survival Guide is divided into seven CHAPTERS. Each chapter has QUESTIONS. Each Question has an ANSWER. Each answer seeks additional FEEDBACK from the PRP community and healthcare professionals..          

Chapter 1 — PRP Basics: 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.  [enter A00 to access Chapter 1 index]          

Chapter 2 — Diagnosing PRP
This chapter covers the onset of symptoms, misdiagnoses, biopsies as a diagnostic tool and what it takes to get an “official” PRP diagnosis. For most of us, this is looking back to see how our experiences compare with others in the PRP community.   [enter B00 to access Chapter 2 index]          

Chapter 3 — 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. [enter C00 to access Chapter 3 index]          

Chapter 4 — Daily Life 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. [enter D00 to access Chapter 4 index]          

Chapter 5 — PRP Parents & Kids 
It is estimated that 45% of all patients diagnosed with pityriasis rubra pilaris are children. The challenges facing parents are extraordinary. This sub-chapter focuses on those special needs  [enter E00 to access Chapter 5 index]          

Chapter 6 — 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. [enter F00 to access Chapter 6 index]          

Chapter 7 — 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. For all intents and purposes, TJU is the only game in town and we encourage PRP patients to play. [enter G00 to access Chapter 7 index]          

Chapter 8 — 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? [enter G00 to access Chapter 8 index]

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.  [enter H00 to access Disclaimer]

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