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A Roadmap for Your PRP Journey

EDITOR’S NOTE:
A webpage-by-webpage review of the PRP Survival Guide began on November 15, 2022. At that time there were 548 published articles, 221 drafts in need of completion and 184 pre-draft articles that may or may not see the light of day.

THE BASICS is where WE started. I say WE because PRP patients and caregivers have a role to play in the expansion of the PRP Survival Guide.

The PRP Survival Guide currently serves over 1,500 PRP patients whose profiles are maintained in the PRP Global Database. The PRP global community includes patients (newly diagnosed or seasoned travelers), caregivers and supporters.

Welcome to the PRP Survival Guide. What do PRP patients and their caregivers NEED to know. While there are certainly other questions to be asked and answered, this is where we focus on the basics.

Start with the NORD PRP Report

Originally published by the National Organization of Rare Disorders in 1996, the NORD PRP Report was revised in 2017 by PRP patients and reviewed by a team of healthcare professionals including a past president of the American Academy of Dermatologists, the Chair of the Dermatology Department at Thomas Jefferson University, and current Vice Chair of the Dermatology Department at Oregon Health and Science University.

The NORD PRP Report provides newcomers (PRP patients and caregivers) with a lay language, patient-friendly overview of PRP. PRP patients and caregivers who prefer gathering information about PRP in a language other than English can use the TRANSLATE button at the top of each page of the PRP Survival Guide.

10 Most Frequently Asked Questions

A diagnosis of pityriasis rubra pilaris comes out of no where. The following are among the most frequently asked questions. These are questions you ask yourself and questions you will be asked by others, e.g., family, friends, etc. You are about to become a Subject Matter Expert (SME).

  1.  What are the odds of getting PRP?
  2. Do we know what causes PRP?
  3. Is there a cure for PRP?
  4. What are the issues related to the diagnosis of PRP?
  5. How do PRP symptoms progress over the body?
  6. What are the basic treatment options for PRP?
  7. How does healing progress?
  8. How long will my PRP journey last?
  9. What is your PRP “Endgame“?
  10. What does the parent of a PRP child need to know?

14 Other Questions Worth Asking

When you have digested the answers to the 10 Most Frequently Asked Questions, it’s time to dig a little deeper. The more you know about PRP from the patient perspective, the more effective you will be as a self-advocate.
  1. What resources are available to support PRP patients and caregivers?
  2. How is pityriasis rubra pilaris pronounced?
  3. What constitutes a rare disease?
  4. Is PRP an autoimmune or auto-inflammatory disease?
  5. How do I find a PRP-savvy dermatologist?
  6. What are the “Quality of Life” impacts of PRP?
  7. What is the Rule of Nines?
  8. What is the PRP Global Community?
  9. What is the basic anatomy of skin?
  10. What is the history of our name (PRP)?
  11. What is the significance of the Dowling Oration (circa 2006)?
  12. Is asking Dr. Google about PRP a “Fool’s Errand”?
  13. Where can I find an effective strategy for Self-Advocacy?
  14. What are the issues related to PRP Research?

3 Rarely Asked Questions

There are questions PRP patients want to ask and questions PRP patients should ask. Consider this last group of questions to be extra credit.
  1. What is the value of being a Storyteller? 
  2. Is there a glossary of PRP Words & Jargon? 
  3. How can I support the PRP global community? 
While every PRP journey is unique to the patient, there are “things” you can find invaluable when dealing with healthcare professionals, family, friends, employers and co-workers, teachers and school administrators and even passersby who stare with curiosity, concern and sometimes even contempt. LINK COMING SOON