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.       

Chapter 5 — PRP Parents & Kids
Onset PRP represents an estimated 40% of the PRP patient population. This chapter supports the unique challenges facing PRP children and their parents.

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.

Adding Gender to “Core Data”

Editor’s Note:

While pityriasis rubra pilaris is considered gender neutral, (see NORD PRP Report), there are those who believe it may be a “wee bit” more prevalent in children diagnosed with Juvenile Onset. Of course Ginny Maxwell (and her PRP kiddos represent a 50-50 gender allocation.

The premise of a Ted Talk video (circa 2013) recently unearthed by Murray Rose (Surrey, British Columbia)  is that research and medicine routinely ignore the”often startlingly different ways” in which the two sexes respond to disease or treatment. As a pioneering doctor on the subject, Paula Johnson describes why lumping everyone (male and female) together in research leaves women’s health to chance. As Dr. Johnson explains:

“Why leave women’s health to chance? This is a question that haunts those of us in science and medicine who believe that we are on the verge of being able to dramatically improve the health of women.  We know that every cell has a sex. We know that these differences are often overlooked. And therefore we know that women are not getting the full benefit of modern science and medicine today. We have the tools but we lack the collective will and momentum.”

Note: The image appearing above “Depression is the #1 cause of disability in the world  today” offered no attribution as to source.  I am assuming it is correct, but will feel better when the statement can be verified.

As an example she explains that women are 70 percent more likely to experience depression over their lifetimes compared with men. “And even with this high prevalence,” she adds, “women are misdiagnosed between 30 and 50 percent of the time. We now know that women are more likely to experience the symptoms of fatigue, sleep disturbance, pain and anxiety compared with men. And these symptoms are often overlooked as symptoms of depression.”

“Women’s health is an equal rights issue as important as equal pay. And it’s an issue of the quality and the integrity of science and medicine. So imagine the momentum we could achieve … if we analyzed our data by sex.”

PATH FORWARD

Perhaps the PRP Global Database should add GENDER to the collection of core data from PRP patients. 

Perhaps the PRP Global Community should take a closer look at “DEPRESSION triggered by the relentless assault of  PRP” to include

(1) the timely diagnosis of depression BASED ON GENDER,

(2) referral to mental wellness resources  BASED ON GENDER,

(3) effectiveness of treatment options BASED ON GENDER, and

(4) the efficacy of those treatment options BASED ON GENDER.

At there very least PRP patients who are female should raise the issue with their dermatologists just to demonstrate that you have your act together.

WATCH Dr. Johnson’s  15-minute Ted Talk video.