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. All too often these efforts lead to redundancy, frustration and even misinformation. If we do are job properly, you will either (1) find the answers you seek or (2) find other options. Learn more about using Dr. Google.

SEARCHING THE PRP SURVIVAL GUIDE

Please use the SEARCH field to locate posts, PDFs and other links. questions, chapters and topics.  The most effective way to access a specific Chapter Index is to use the Table of Contents link below.

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.

TABLE OF CONTENTS

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.       

✯✯✯ BOOKMARK ✯✯✯
A standalone Table of Contents
has been created
for PRP patients and caregivers
who are NOT first-time visitors.

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.

Meet & Greet — What are the Odds

by Bill McCue

On May 16, 2019, Christina W (Wylie, TX) posted that she had an unscheduled Meet & Greet with Doug F (The Colony, TX) on May 15, 2019. Face-to-face Meet & Greets are not as rare as pityriasis rubra pilaris, but as radio legend Paul Harvey would say, “You need to hear the rest of the story.”

Christina and Doug ENCOUNTERED one another quite unexpectedly at the Hallmark store on the corner of 15th and Alma in Plano, Texas where she works. Wednesday, the 15th, was Christina’s normal day off, but not this May 15th.

Doug had been on medical leave as a driver for FedEx and just recently returned to work at FedEx to preserve his health insurance. On May 15th he was filling in for another driver.

They should NOT have encountered one another. But the planets were in alignment.

When Christina saw Doug at the front of her store to make a delivery, she directed him to the backdoor. Let’s just say that when she opened that door, Doug looked like a FedEx driver who REALLY enjoys the sun. “That’s quite a sunburn,” she noted. Doug explained that he had a rare skin disorder called pityriasis rubra pilaris.

If the odds of getting PRP are one in 400,000, what are the odds of a Hallmark employee working on a day she wasn’t supposed to work “bumping into” a FedEx driver making a delivery he was not scheduled to make.

I know the Hallmark store on the corner of 15th and Alma because I live one block from 15th and Coit. I knew Christina lived in Wylie, but didn’t know she lived “down the road”.

May 17, 2019

I saw Christina’s post on the 16th and. without fanfare or warning, I drove to Christina’s store, asked a fellow employee to point her out. She was restocking cards (Duh).

“How may I help you?” she asked.

“I’m looking for a get well card, a specialty get well card.”

I paused and then added, “… a get well card for someone with PRP.”

Christina smiled and just said, “Bill”.

Since she was working we couldn’t chat for too long. Instead we agreed to Meet & Greet again — a North Texas Meet & Greet with Doug  and anyone else we can corral. “Corral” is Texan for invite.

As I left I gave her a PRP Mug. But that’s another story.