Protected: Updating PRP Patient Profiles Enters Phase 2
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May 2018
Protected: Relaunch of “On the Road…”
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Working Group Created to Preview Survey
As you all know, I began building a PRP database during the Spring of 2013 in an effort to inspire researchers in dermatology to focus their attention on PRP. I believed then, as I do now, that a robust PRP Community Database would become a channel of communication no researcher could replicate. It’s part of …
Joint PRP Study Announced
HOLD FOR RELEASE Pityriasis rubra pilaris (PRP) is a rare skin disease of unknown etiology, which medically is often difficult to treat. For a patient with PRP, the disease can completely alter one’s ability to work and attend school. Quality of life is often greatly reduced, and many patients experience profound psychological impact due to …
How do I find my type?
Editor’s Note: Before we start — have you completed your PRP Patient Profile yet? Go directly to: https://conta.cc/2IOBEUA or learn why your PRP patient profile is so important. There have been two recent questions, each embedded in an unrelated post. PRP Facebookers: Leith W (Queensland, Australia) and Marilyn C (Irvington, AL) asked: How do I find …
OHSU Studies PRP and Taltz (ixekizumab)
From the Editor… Nearly two years ago (May 17, 2017) I received an email from Dr. Teri Greiling, Assistant Professor of Dermatology at Oregon Health and Science University in Portland, Oregon. Like every PRP patient and caregiver, Dr. Greiling lamented the fact that not a single therapeutic trial had ever been conducted for patients with PRP. She also …
New Member Orientation
From Bill McCue, Editor PRP Survival Guide Tierney Ratti (1961-2020) was a PRP veteran who became the Gold Standard of caring and sharing. Her journey began in 1972 at the age of 11 with the onset of pityriasis rubra pilaris. She was one of the original “Pretty Red People” who traded emails on AOL — You’ve Got Mail. Inspired …
Adult Onset versus Juvenile Onset
For most patients and caregivers, a diagnosis of pityriasis rubra pilaris results in a search of the internet. Dr. Google and Dr. Yahoo confirm that PRP is a rare skin disorder that may develop during childhood or adulthood. With great redundancy we are told the following: ✔︎ Adult onset accounts for 55% of the “active” PRP patient …
We are all a piece of the PRP puzzle
During the first 15 days of our 45-day campaign to update 1,000 PRP patient profiles, we reached out to 1,607 patients or caregivers. The good news — we are one-third of the way to reaching our goal. The first observation worthy of note is that 75% of those who have responded thus far are members of the PRP …