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.


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.


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.


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.


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]

Survival Guide prp00

PRP — The Poem

by Greg Shalless

(PRP Onset January, 2008. Duration: Two years)

Pityriasis Rubra Pilaris
I don’t want to sound too alarmist,
But your skin turns bright red
And in layers is shed –
Who needs this kind of catharsis?

It happens when you’re quite mature
And you lose any sense of allure,
It will no doubt cause tears
And be with you for years,
For there is no known cause or a cure.

Fingers tingling and nails corroding,
Eyelids stinging and you are imploding,
Your “hot” body’s glowing,
Your dandruff is snowing
And your feet when in shoes are exploding.

Your hands feel like stiffened old leather,
But later on you won’t know whether
To be glad that soon it’ll
Crack up it’s so brittle,
But you try hard to keep it together.

Crispy skin simply falls off your feet
Like the flakes of a fine pastry treat
And the incessant itch
Is a right proper bitch
And your whole blood red body’s on heat.

It’s tough to explain what you’re feeling
When people ask if it’s healing
For your legs and your arms
Like the back of your palms
Are still scarlet and constantly peeling

They say it’ll pass but can’t tell you when
You see a marked improvement and then
Your new skin gets drier
Is once more on fire
And the whole thing starts over again.

The spread of this thing is pervasive,
And clothing can be quite abrasive,
But if you went “nudish”
Although they’re not prudish,
You’d even make nudists evasive.

And if you’re an unlucky squire,
Watch out for the “Great Balls of Fire”,
But if you’re a lady
At the zoo then you maybe
The Mandrill’s object of desire.

Didn’t you thank them – it seems you forgot?
Fifty odd years in the Skin Plant for what?
So your angry storeman
Has just shot the foreman,
And the staff have now all lost the plot!

PRP is quite clearly no joke
And its treatment might well send you broke,
Though they don’t have an answer
You haven’t got cancer
And you’d much rather this than a stroke.

© Copyright Greg Shalless – 2008