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]

Survival Guide prp00

FAQs — PRP Patient Profile Update


WHY SHOULD YOU SHARE YOUR INFORMATION?

The answer has become the mantra to many: “We are on this journey together!”

 To understand pityriasis rubra pilaris through the shared experiences of those who have been afflicted.

✽  To minimize feelings of isolation. To know that we are not alone. We are a community of kindred spirits.

✽  To recognize that everyone has their own version of PRP and what works for one may not work for another.  Together we can find effective ways to cope with pain, anxiety, stress, depression and frustration.

✽  To promote a better understanding of our disease within the PRP community by sharing our personal experiences with treatments, dermatologists and other health care professionals.

✽  To promote participation in bona fide research projects designed to improve the diagnosis, treatment and understanding of PRP by the medical community. We must find ways to enlighten dermatologists and other healthcare professionals.

CLICK HERE TO COMPLETE YOUR PRP PROFILE


WHAT CONSTITUTES A  PRP PATIENT PROFILE

Your PRP Patient Profile consists of seven data points, e.g., patient name, email address, location, onset date, onset age, current status (active vs. remission) and, if applicable, the remission date. While we would love to know the name of your dermatologist, and the efficacy of the drugs you have been prescribed, these seven datapoints represent the absolute CORE of what we need to know now.

CLICK HERE TO COMPLETE YOUR PRP PROFILE


WHY IS YOUR  EMAIL ADDRESS IMPORTANT?

There are two reasons we require an email address. The first is purely administrative. When you complete your online PRP Profile we will send a confirming email that includes a screen shot of your PRP Profile. If the email “bounces back” as undeliverable, we will not include the profile. The second reason is to simplify and expedite future, ongoing  communication. While every PRP patient has the right to opt out of future contacts, we hope to make the case for staying connected to receive a PRP newsletter and updates on PRP research and treatment options. Your email address remains confidential and will not be shared or sold to any third party, including PRP researchers.

 CLICK HERE TO COMPLETE YOUR PRP PROFILE


WHY IS YOUR LOCATION IMPORTANT?

“Location” helps us confirm the PRP patient population by country and state/province.  The estimated “active” prevalence rate of PRP is one out of 400,000. In the U.S. for example, the projected PRP patient population should be 814 based on the estimated population of 325.7 million (2017). To date, however, we have only been able to identify 255 “active” PRP patients in the U.S. The same conundrum applies to the worldwide PRP community. “Location” can be an important criteria for PRP research. While PRP research at Thomas Jefferson University is international in scope, therenare other opportunities where geography plays a critical role. “Location” also helps facilitate PRP Meet & Greets. The PRP Community Database has been an effective tool in bringing PRP patients together and identifying PRP-savvy dermatologists.

CLICK HERE TO COMPLETE YOUR PRP PROFILE


WHY IS YOUR ONSET DATE & AGE IMPORTANT?

“Onset Date” and “Onset Age” confirms the start of the journey. 668 (missing 1,049)
An estimated 90% of the PRP patient population will achieve some acceptable level of remission within three to five years. Imagine having 1,000 PRP patient “in remission_, patients who have shared their Onset Date and Remission Date. We can effortlessly calculate duration.
Onset Age is another way to identify Adult Onset versus Juvenile Onset. This is especially helpful in reaching out to the parents of children and young adults with juvenile onset PRP.

WHY IS YOUR CURENT STATUS IMPORTANT?

The answer is research.
For ACTIVE PRP PATIENTS the PRP experience is current and ongoing. They are on the journey in real time and facing the immediate challenges of body, mind and spirt. Their insights reflect NOW. Active PRP patients are prime candidates for clinical trials and the testing of drugs with FDA approved for psoriasis, atopic dermatitis, etc.

PRP PATIENTS IN REMISSION are especially well suited for research about remission as well as retrospective research about treatment options, e.g., what worked and what didn’t. While many PRP patients in remission disengage from the PRP community, their value to our understanding of PRP cannot be overstated.

WHY IS YOUR ROAD AHEAD IMPORTANT?

Whether ACTIVE or IN REMISSION, PRP patients know more about living with PRP than the dermatologists who treat us.
PRP patients who are current or past members of the PRP Facebook Support Group are motivated to share.

PRP patients who share are LEADERS within the PRP community. Your willingness to create and/or confirm a PRP Patient Profile serves to inspire others.

 

More Questions? Send email to: bill.mccue@prpAlliance.org