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. Share what you have learned about the impact […]
Focus on Fingernails Read More »
There has never been a WORLDWIDE SCIENTIFIC SURVEY of 1,000 PRP patients! … until now. On July 29, 2018, over 1,100 PRP patients (or their caregivers) were invited to participate in the UCLA PRP Survey. While 418 (41%) opened the email, only 128 clicked the link to the UCLA PRP Survey page. Said another way:
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP? Some basic questions… What is a patient advocate? What is a PRP advocate? What are the advocacy Issues? ❏½ PRP Advocacy Agenda – June 2017 With
ARCHIVE PRP Advocacy Read More »
The PRP community has long lamented the lack of research. Since October 2012, however, researchers at Thomas Jefferson University have been conducting ongoing genetic research. In 2014 their research efforts expanded to include clinical analysis. For all intents and purposes, TJU was the only game in town. ❏½ What is the status of PRP Research?
From the Editor… From the Editor The 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 and
Chapter 4 — PRP and Remission Read More »
Chapter 3 of the PRP Survival Guide has been revised. Please go to DAILY LIFE.
Chapter 3 — Living with PRP Read More »
This chapter covers the onset of symptoms, misdiagnoses, biopsies as a diagnostic tool and what it takes to get an “official” PRP diagnosis. For most of us, this is looking back to see how our experiences compare with others in the PRP community. The Basics ❏“ How is PRP diagnosed? ❏“ What are the symptoms
Chapter 1 — Part B: Diagnosing PRP Read More »
The PRP Survival Guide has been reorganized. Please go to: PRP 101: The Basics
Chapter 1 — Understanding PRP (redirect) Read More »
From the Editor I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 – nearly three months after a red spot appeared on my forehead. Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper
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The Dowling Oration was delivered by Dr. Andrew Griffiths in Liverpool, England in March 2003 as he reflected on 35 years as a dermatologist. It is frequently used as a reference in PRP-related research. To explain his methodology for calculating the prevalence rate of pityriasis rubra pilaris, Griffiths writes: “Most dermatologists never have a new
The Dowling Oration Read More »