PRP Survival Guide

PRP Survival Guide

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From the Editor (June 10, 2025) 

I have been writing about PRP from the patient perspective for over 12 years.  My immediate goal is to create a PRP Archive toe enable patients and caregivers to more easily access what I have already written.

To that end the PRP Survival Guide will undergo significant changes in the weeks and months ahead.

I have given the PRP Global Community 14 years.
All I ask is for 10 minutes — the time it will take to understand the importance of the PRP Archive.           

Since its inception in 2013, the PRP Survival Guide has been offered to the PRP Global Community as “an ever-expanding repository of PRP insights and observations shared by PRP patients and caregivers.”  That will not change. In fact, there will be a sign over the front door.

So, where do we start?

 

1.  Let’s start with the challenge (May 2014)
My PRP journey lasted 20-months, 16 months sooner than I had expected. I did not travel alone. I knew nothing about the Facebook-based PRP Support Group until November 11, 2013 when I was recruited by the late Tierney Ratti to join as a member and serve as an administrator.
Every year I ask myself the same question and get the same answer.
  • Question: Why should I stay involved with PRP?
  • Answer: Because I can make a difference!

In 2013 the difference I made was starting the PRP Global Database. Today there are over 5,000 PRP patient profiles.

In 2014 the difference I made was publishing a newsletter called On the Road — The Journey from Onset to Remission. Between April 2014 and October 2015 I wrote and distributed total of 24 issues (600 pages) that were shared with the PRP Global Community between April 2014 to October 2015.
 
On May 1, 2014, I published the third issue of the PRP newsletter as a challenge to the PRP Global Community. 
 
“It’s time to challenge the status quo
and dramatically improve the diagnosis and
treatment of pityriasis rubra pilaris. Now.”
It was my roadmap as an PRP Advocate. I shared my objectives and asked for support. The response carried me at least another three years
 
Rules of the Road — Just four suggestions
  • Don’t try to read all 18 pages. It’s worth it, but not now.
  • Just SCROLL through the PDF.
  • SCAN the headlines and subheads.
  • NOTE the images — you may recognize some kindred spirits (seasoned travelers)
  • Briefly PONDER tables and charts. Numbers tell stories. 
The PRP Archive will provide access to ALL  24 issues. It’s PRP history…our PRP history!
 
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2.  60-Second PRP Roadmap (March 2024)
After publishing 18 issues of the On the Road newsletter I realized that six more issues was all I had in me.  After October 2015, everything I wrote about PRP uploaded to the PRP Survival Guide. By March, 2024 the “ever-expanding repository” had amassed over 800 webpages (easily equivalent to 8000 newsletter pages).
 
A translate button at the top of every webpage enabled PRP patients and caregiver to read in a language other than English.
 

In March 2024, the PRP Alliance published the 60-Second PRP Roadmap, Peer Review Workbook. 

The 340-page, 60,000-word  DRAFT was designed to be read by members of the PRP global community. The peer reviewers were asked to provide feedback, e.g.,What’s missing? What’s unclear? 

  • Section1: First Questions (16)
  • Section 2: Diagnosing PRP
  • Section 3: Treating PORP
  • Section 4: Quality of Life Impairments
  • Section 5: Glossary of PRP Words & Terms
  • Section 6: PRP Support
  • Appendices: A-H
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3.  The PRP Survival Guide (circa 2025)
The PRP Survival Guide is an ever-expanding online repository of PRP patient insights and experiences. The immediate and ongoing challenge is to make it effortless for patients and caregivers to find the answers they seek.
 
The Basics
                                              
I absolutely need your help to move forward. Please donate to the PRP Alliance so I can create a PRP Archive for current and future PRP patients, their caregivers, dermatologist and general practitioners. $20.25 help…but MORE will help MORE.
 
I really hope we are still in this together!
Please help me build a PRP Archive
for the entire PRP global community.
 

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