It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an […]
A PRP Newsletter Reborn 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 and signs? (NORD
Chapter 1 — Part B: Diagnosing PRP Read More »
by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.
PRP Community Database Update Grant Read More »
. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become
The Right to Say “NO” Read More »
What are the 6 types of PRP? The initial five classifications of pityriasis rubra pilaris were presented to the British Association of Dermatologists in 2003 by Dr. Andrew Griffith, a well-respected London-based dermatologist. His classifications reflected 35 years of diagnosing, treating and researching PRP and have been universally accepted by dermatologists worldwide. According to Griffiths, the PRP patient population can
What are the SIX “types” of PRP? Read More »
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 »
Diagnosing PRP — The Advocacy Mission Editor’s Note: The timely and accurate diagnosis of pityriasis rubra pilaris is a goal shared by the PRP global community. We are confident that when a dermatologist suspects PRP and specifically instructs the dermatopathologist to look for evidence — a diagnosis supporting clinical observations is the result. Patient Self-Advocacy
Advocacy issues related to diagnosing PRP Read More »
EDITOR’S NOTE: The late Ron Moody’s performance of Reviewing the Situation has alway been my favorite song from my favorite musical, Oliver! In 2013, after writing the first stanza of a parody, I’m Reviewing the Diagnosis, my Muse went quiet. While attending a dermatology conference in Vancouver (June 2015), however, I was inspired by a Frenchman, two
I’m Reviewing a Diagnosis Read More »
Orphanet maintains the Orphanet nomenclature of rare diseases, essential in improving the visibility of rare diseases in health and research information systems: each disease in Orphanet is attributed a unique and stable identifier, the ORPHA number. Orphanet uses the European definition of a rare disease, as defined by the European Union Regulation on Orphan Medicinal
What is the ORPHA number for pityriasis rubra pilaris? Read More »
EDITOR’S NOTE: The more we know about the business of dermatology and the regulations which impact the delivery of services business, the more likely we are to understand the challenges they face. The following article was published in the October 2015 issue of On the Road…. The diagnosis and treatment of PRP involves patient and dermatologist.
Were dermatologists ready for ICD-10? Read More »