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.

PRP Canada — Murray Rose

Editor’s Note:

The following is an Open Letter from Murray Rose regarding PRP Canada and his assignment as PRP Canada Liaison.

I was born in Vancouver, British Columbia, Canada in 1950, and have lived and worked in and around Vancouver all my life. Married to Carel, another native Vancouverite,  for 43 years this year, and who has helped me so very much with living with PRP. I was so fortunate to have such a wonderful caregiver as I’m sure anybody who has a caregiver will agree with my good fortune.

We are fortunate in that both of our grown up children live within a short distance from us and we get to see them often.

My first symptoms occurred in late August 2016 – two years after I retired from an accounting/business career – when I had just turned 66 and was very healthy for my age, as I have been throughout my life, never having had to spend a day or night in a hospital. After seeing my family doctor, who had no idea what was going on with my body, an appointment with a derm was made for one month later. During that month the red tide kept on sweeping down my body at a scary, alarming rate. My first appointment with my derm was a blessing. He and his associate were psoriasis researchers but had studied PRP. I left his office feeling upbeat and have had excellent care from him ever since.  

When I first  became a member of the Land of Chat (November 14, 2016) , I kept asking Tierney questions about our numbers, about this, about that. Most of which took some time for Tierney to look up and answer. Finally, after I had worn her down with all my questions, she asked if I would like to see the numbers myself. But to do so she would have to make me an administrator of the site. I’ve never regretted my decision when I said “Yes, make me an admin!” for I have learned so much. 

And now, 4 years later, I am looking forward to my new administrator position at PRP – Canada, using all that I have learned as an admin of the Land of Chat.

I am somewhat surprised that Bill McCue convinced me to volunteer for this position, but there was a reason, as you will see. 

Originally Bill asked if I would like to be the “King of Canada” when it came to PRP. Nice title! I’ve never been a King before and was very much looking forward to that lofty position. I immediately accepted his offer. As King, I could do anything I wanted – no questions asked! Neat!! 

And then a short while later Bill sent me a draft of the announcement  that you see above. In a short while I had lost my neat title and had been reduced to a Liason. What the heck is a Liason? I didn’t know and so asked Bill for an explanation. He replied, saying that he would tell me later, which he did.  “A liaison is what I tell you it is.” Hmm, I guess I can live with that.

I immediately cancelled my Amazon order for a King’s Crown (I had found one with PRP-red jewels!) hoping to replace it with a Liason Crown. But Amazon had no examples of a Liason Crown. Damn! I think I’d look pretty spiffy wearing a crown. Oh well… 

I do have some of my own ideas though which I will share in an email to my fellow Canadian members. And on that point I would like to mention that up to now Bill McCue is the only one to have member’s email addresses – neither Tierney nor myself have ever had your email addresses. In Bill we trust! That is something that the three of us have always been in complete agreement on – the importance of confidential information. Bill has now provided me with our Canadian member’s email addresses and other data so that I can communicate with my fellow Canadians. I will not be disclosing that info to anybody and will not be bombarding you with emails.  I do hope though that when you do receive an email from me you will take the time to read it and hopefully respond so that we can help each other, and new members yet to come,  live with PRP in Canada.