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.



The PRP Survival Guide is divided into four sections:        

THE BASICS

We begin PRP 101 with the basics. Whether you are a newly diagnosed patient or supportive caregiver (spouse, partner, parent, family or friend), or a more “seasoned traveler”,  the questions we hear most often fall conveniently into two categories:

✽   Questions with answers you WANT to know

✽   Questions with answers you NEED to know       

TREATING PRP

Treating PRP focuses on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in our PRP journeys that the efficacy of treatment is a roll of the dice. We also learn that not all dermatologists are created equal. Not all dermatologists are PRP savvy. We want patients and caregivers to have a basic understanding of the options and confident in your ability to ask your dermatologist important questions.

DAILY LIFE

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 from members of the PRP Facebook Support Group.                

 THE ENDGAME

For most PRP patients and caregivers, the outcome we seek is remission. The definition of remission can include “symptom-free with meds”, “remission with remnants”, and the least technical variation: “I finally have my life back”. For others, the PRP journey is defined by long-term management of symptoms rather than remission. 

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.


GRIDD — The PRP Invitation


It took five years to get here, but it was well worth the effort.

In June 2015, I traveled to Vancouver, Canada to meet with the leaders of over 60 global dermatology patient organizations. We were there to discuss the creation of an international alliance. As a group we all lamented the same problem. On one hand, patients with dermatology conditions, including PRP, face almost insurmountable challenges to body, mind and spirit. On the other hand, healthcare decision-makers incorrectly perceive the relative impact of skin conditions to be considerably lower than most other diseases.

Said another way: They don’t think we suffer enough.

Dermatology patients, like us, have always had a firm grip on the short end of an already short stick. By week’s end, however, we 60-plus had set in motion the creation of the International Alliance of Dermatology Patient Organizations (IADPO) and started a journey that brings us GRIDD. It has also been my good fortune to serve as a Founding Board Member of IADPO (GlobalSkin) for four years. Bottomline: When it comes to PRP research, GRIDD is the real deal.

Why GRIDD and PRP?

The Global Research on the Impact of Dermatological Diseases (GRIDD) project provides a unique opportunity to integrate dermatology impact data derived directly from patients who suffer from a large spectrum of diseases (including PRP), GRIDD will be the first comprehensive patient impact project in the history of dermatology. The PRP community is part of this effort.

DALY Currently, global rankings of diseases, such as the Disability Adjusted Life Years (DALY), place dermatological disorders relatively low thereby inferring that conditions like PRP do not have a significant impact on our quality of life.This is simply not accurate or fair for the PRP global community.

DLQI The data produced by GRIDD will play a vitally important role in addressing this low disease ranking as well as the widely acknowledged weaknesses of the Dermatology Life Quality Index (DLQI). It’s all connected.

GBD GRIDD is also a response to the World Health Organization’s Global Burden of Disease (GBD) initiatives which have also underestimated the toll of living with a dermatology condition like PRP. Data from the GBD projects are used to identify patient needs, develop policies, and determine resource-allocation and research priorities on a global scale. We need to be better positioned.

The global PRP community needs all the help we can get. GRIDD will be used to help advocate for needed change and will offer the world new perspectives on the lives of millions of people who suffer from dermatological diseases like PRP.

Objectives of GRIDD

The GRIDD project has the following key objectives.

❏   Engage PRP patients worldwide in order to collect information about the burden of PRP. This is where we are today.

❏   Generate PRP-specific data on the impact of dermatological diseases

❏   Raise the “burden ranking” of dermatology diseases — including PRP

❏   Lobby for better PRP treatments and enhance the support needed for the PRP global community,

GRIDD: Q&A

Why have I been invited?

❏   You have been diagnosed with PRP.

❏   You are 18 years or older. A separate survey for PRP patient who are less than 18 years will be developed by the PRP Alliance in cooperation with the PRP Facebook Support Group.

What will taking part in GRIDD involve?

❏   You are asked to complete two online surveys, one in January and one in Febriuary.

❏   Each survey will take approximately 15 minutes.

❏   The second survey will feature issues raised by responses to the first survey.

What are the possible benefits of my participation?

 ❏   The research findings will help raise awareness among decision-makers, clinicians and researchers. This will, over time, improve the experience of patients and help us to understand how to improve care and treatment of people living with a dermatologivcal condition like PRP.

 How will my information be be kept confidential?

❏   All electronic data will be kept on a password-protected server in accordance with the European Data Protection Act and will only be accessible to the research team and regulatory authorities.

Who is organizing and funding the GRIDD project?

❏   GRIDD is a project initiated and funded by the International Alliance of Dermatologist Patient Organizations (IADPO). It is being co-led by researchers from Cardiff University (Professor Chris Bundy) and Hamburg University (Professor Dr. Matthias Augustin)

What happens next

❏   As a participant, you must read and accept the terms of the Content to Participate Form. This is “standard stuff”,

❏   As a participant you must provide an email address so you will (a) receive a Participant Code via email and (b) get a link to set your password. You will be able to log out and back in.

 

The Worst-Case Scenario Perspective

The best part of the GRIDD experience for me as a participant was the fact that I didn’t have to remember specific dates, medications or come up with details that required research. Everything I needed to know was already in my head.  It’s a simple process.

(1)   Read a statement, e.g., I struggle to fall asleep.
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(2)  Next,  think about YOUR worst-case scenario. In my case it was VERY MUCH until I discovered a “sleep cocktail” that worked: hydroxyzine, Ambien and drink no water after 9:00 PM.
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(3)  Select one of the five options that reflects your worst-case scenario.

❏    Not at all or not applicable
❏    Somewhat
❏    Moderately
❏    Quite
❏    Very much

Your participation in the GRIDD survey is critically important to the PRP global community. GRIDD is an opportunity for YOU to document the impact pityriasis rubra pilaris on your own life.

1.  Physical impacts, e.g., pain, itch, mobility, vision, sleep, etc.
2.  Daily life impacts , e.g., daily routine, leisure, work and school
3.  Psychological impacts, e.g., stress, depression, control, coping, etc.
4.  Social impacts, e.g., isolation, relationships, people who stare, etc.
5.  Financial impacts, e.g., lost wages, affordability of treatments, etc.
6.  Medical impacts, e.g., limited access to dermatological services and treatments


If WE don’t share our PRP insights, how will the rest of the world learn about us?

CLICK HERE TO ACCESS GRIDD INVITATION