— Bill McCue, PRP Alliance
IMHO — a newly diagnosed PRP patient in 2019 has access to more patient-friendly information than I had access to in 2012
It was the evening of November 28, 2012 and I was in a state of escalating FEAR, still trying to comprehend my PRP diagnosis. All I really knew was the proper spelling — pityriasis rubra pilaris. Still, I was determined to learn more before my clinic appointment scheduled for the following day.
Almost all the information I found using Google was either redundant and written for dermatologists and other healthcare professionasl. I did discover, however, the PRP Support Group, an email-based group of PRP patients an caregivers that formed in late 1997.
I quickly devoured their FAQ webpage but was frustrated to learn that the last revision of the document was in January 2005. Nearly eight years had passed. Still, it was the best information I could find.
The PRP Support Group also offered a subscription to the PRP-L, a list serve where each month a handful of PRP patients and caregivers traded 150 emails asking a questions, sharing insights, and seeking the camaraderie of fellow patients and caregivers. (Today, each month, nearly 1,300 members of the PRP Facebook Support Group generate 1590 posts, respond with over 2,000 comments and over 4,000 reactions, e.g., likes and loves. )
Over the next several months I grew frustrated by the lack of patient-friendly information about PRP. By March, 2013 I decided to create an online PRP Survival Guide. To that end, I actually read 29,000 emails in the PRP Support Group archives, built a database, and began collecting information from patients and caregivers about their PRP journeys.
“It’s time to make what we have today even better for over 1,800 PRP patients maintained in the PRP Global Database and the yet-to-be diagnosed PRP patients.
I have three special PRP Awareness Month (November 1-30) projects in the queue. I am asking for your financial support.
PRP Survival Guide eBook
My objective is to convert the PRP Survival Guide into a series of topic-specific eBooks. eBooks will be more easily shared with patients, caregivers, their families and friends, and even their dermatologists. The eBook format will significantly enhance the readability of the information I have been amassing over the years.
PRP Awareness Outreach to Dermatologists
There are currently over 1,800 PRP patient profiles and 700 PRP-savvy dermatologists maintained in the PRP Global Database database. Dermatologists who actually treat PRP need a broader patient perspective. While our dermatologists see PRP for minutes per month, we live PRP every minute of every day. Our PRP-related insights and experiences must be shared with those who actually treat PRP.
PRP Research Outreach Program
Recruiting patients for PRP research is a major hurdle that PRP researchers must overcome. A formal PRP Research Outreach Program will focus on 88 teaching hospitals where students and faculty conduct research on rare skin diseases. We have nearly 1,900 PRP patients that researchers desperately need. Moreover, we have already done the “heavy lifting” for UCLA, USC, Thomas Jefferson University and Oregon Health and Science University. We can do more for them and others.
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