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? ✽ PRP Advocacy Agenda — June 2017 […]
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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. ✽ What is the status of PRP Research? ✽
Chapter 3 of the PRP Survival Guide has been revised. Please go to DAILY LIFE.
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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 and signs? (NORD
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The PRP Survival Guide has been reorganized. Please go to: PRP 101: The Basics
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The Dowling Oration of March 2003 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
What constitutes a rare disease? While not as unique as a unicorn, rare and genetic diseases are uncommon to most doctors and, as a whole, represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem. Here
How to deal with rude people There is a WebMD article about “rude people” written by Camille Noe Pagán, a seasoned journalist specializing in health-related issues. While her article focuses on patients suffering from psoriasis, there are important takeaways for the PRP global community.Comments and questions from others who don’t understand can get some pretty
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The History of our Name When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris. In 1828, however, Mr. Shooter’s skin disorder did not yet have a name. Seven years passed before Claudius Tarral, a French dermatologist, wrote about the case in “Traite theorique
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Pityriasis rubra pilaris (PRP) is a group of rare skin disorders that cause inflammation and shedding of the skin. Typically, PRP appears first as a small spot somewhere on the body and then spreads elsewhere. It will impact different parts of the body in different ways for unpredictable periods of time. PRP patients and their
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