History in the making
No one has ever written a book about pityriasis rubra pilaris from the patient perspective — let alone two books.
Moreover, no book has ever been written about PRP that will be peer reviewed by over 300 PRP patients and caregivers, and a team of PRP-savvy dermatologists.
And that’s how we’re making history with the Peer Review Workbook.
6 Steps In 60 Seconds
Roadmap
In late November, 2012, when Bill McCue was diagnosed with pityriasis rubra pilaris , he set out to learn as much about PRP as he could, as quickly as he could. “It was a fool’s errand,” he recalls. ”Most of the information I discovered back then was written for healthcare professionals. The rest was limited in scope and painfully redundant. Today is a new day!”
Books
The 342-page Peer Review Workbook is the first of five 60-Second PRP Roadmap books and serves as the “rough draft” of the second book. Journeys from Onset will reflect the feedback received from over 300 PRP patients and caregivers. Peer reviewers will help Bill identify topics not included in the Workbook and questions still in need of answers.
Alliance
During the Spring of 2013 as his PRP journey lumbered on, Bill’s “get up and go, got up and went”. As a member of a now disbanded email-based PRP support group, he “harvested” 29,000-plus emails representing 16 years of PRP-related insights and experiences by over 1,500 PRP patients. Data collection continued for another 11 years and has resulted in a PRP Global Database becoming the cornerstone for ongoing PRP research.
Hope
Founded as a “public group” in 2006, the Facebook-based PRP Support Group became a “Closed Group” in 2013 with only 120 members. Over a decade later membership now exceeds 2,200 PRP patients and caregivers who annually generate over 1,000 posts and 18,205 comments. The 300-plus PRP Facebookers recruited to critique the Peer Review Workbook are all bona fide PRP subject matter experts. Collectively they will help Bill broaden the scope and content Journeys from Onset.
Survival
The PRP Survival Guide was officially launched in 2015. The initial goal was to identify, research and publish online a broad spectum of topics of specific interest to the PRP global community. Over the past nine years the PRP Survival Guide has published over 600 webpages written for PRP patients and PRP caregivers. Moreover, each webpage has been enabled to provide translation from English to over 100 other languages.
Contact
As you ponder whether or not to become a peer reviewer, or if you have a PRP-related question, please complete the Contact Form. Your message goes directly to Bill McCue, the author.
60-SECOND ROADMAP COLLECTION
Bill McCue, Author: Like every PRP story, mine began with “skin run amuck”. In August 2012 a red spot, the size of a dime, appeared on forehead near my left temple. In a week it was the size of a quarter — large enough to warrant a visit to my dermatologist. By the time I was examined, the left side of my face was covered by an angry rash the size of a dollar bill.
I was immediately diagnosed with seborrheic dermatitis and began a diagnostic odyssey that included full body coverage, four bioipsies, the early-morning hallucination of a 20-foot rubber duck, and six days in the hospital. It was the on-call dermatologist who Rinally diagnosed PRP. Fur months after onset.
My predicably unpredictable PRP journey victimized me for another 20 months. By April 2014 I was symptom-free and med-free.
I could have easily written a story about my own PRP journey from onset to remission. But, that would be a fool’s errand. Every PRP journey is unique. We all start at onset — but the rest is predictably unpredictable.
Rather than write about my journey, I have set my sights higher with Journeys from Onset. Lots of journeys.
That’s why over 300 PRP patients/caregivers have peer reviewed the Peer Review Workbook, shared their insights and helped me get it right.
