From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the […]
Asking Dr. Google? Read More »
From the Editor… Cami B Â (Pine City, MN) is participating in ongoing PRP research at Thomas Jefferson University. Misdiagnosed She received an email on June 13, 2017 requesting blood samples. from TJU researchers. The following day she went to the lab where the blood samples were taken. It was then off to the Post Office.
Shipping Blood Samples: Pine City to Philly Read More »
NOTES Describe Juvenile Onset PRP ✽  We want to describe Juvenile Onset PRP rather than PRP in general ✽  This should be a general overview and include Type 3, 4 and 5 ✽  What are the SPECIFIC challenges facing PRP parents and PRP children? Describe your child’s version of PRP ✽  We want to describe the child’s SPECIFIC
School Letter Part 1 Read More »
The many definitions of REMISSION  There does not appear to be an official definition of REMISSION as it applies to pityriasis rubra pilaris. REMISSION comes from the Latin remissionem, meaning “relaxation, a sending back.†If something difficult lets up, you’ll be able to relax a little.  Here are some definitions to ponder. When you are
The MANY definitions of remission Read More »
Dateline: November 22, 2022 — This page of the PRP Survival Guide was originally designed to be a repository of experiences and insights shared by the parents/caregivers of children diagnosed with PRP. It was also intended to serve adults diagnosed with PRP as children. With the help of PRP parents, we hope that this webpage will
PRP, Children and Parents Read More »
From the Editor… For any PRP parent with a PRP kid in need of a summer experience in a PRP-friendly environment, consider Camp Discovery. What they say about themselves: Camp Discovery was founded in 1993 and offers a summer camp experience like no other. Every summer, the American Academy of Dermatology sponsors six weeks of
American Academy of Dermatology Summer Camp Read More »
Signs and Symptoms of PRP From the Editor…How does pityriasis rubra pilaris present? What are the “signs and symptoms” available to a dermatologist that signal the possibility of a pityriasis rubra pilaris diagnosis. What are the clues dermatologists seek? Here is what a search of the internet will find. Healthline.com PRP causes pink, red, or orange-red scaly patches on your
Signs & Symptoms of PRP Read More »
 From the EditorThe PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge.Share what you have learned about PRP parenting as a patient or a parent. Share what you have been told
PRP Parenting Index Read More »
From the Editor…  The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment. PRP patients and caregivers often require one or more referrals
Building a PRP Team of Healthcare Professionals Read More »
From the Editor… In May 2015, a group of PRP patients and caregivers shared their random observations about living with PRP. Some observations make us laugh, some make us cringe with a returning memory. PRP is a journey…a long journey. And no one know the road from onset through remission better than the PRP community. We were the experts
Observations from the Land of Red & Shed Read More »