From the Editor… From the perspective of a PRP patient or caregiver, the definition of DIFFERENTIAL DIAGNOSIS is: Any alternative diagnosis that precedes the enlightened diagnosis of pityriasis rubra pilaris. The PRP community is painfully aware of the challenges faced by both dermatologists and dermatopathologists in the timely diagnosis of PRP. (1) What symptoms are […]
From the Editor… I have been working on a revision of the PRP Report in the Rare Disease Database hosted by the National Organization of Rare Disorders. One of the topics is SYNONYMS. NORD PRP REPORT SYNONYMS NORD guidelines require “a list of other names for pityriasis rubra pilaris. The current PRP Report offers six
NOTES — Synonyms & Subdivisions Read More »
From the Editor – DRAFT The following is a discussion about a topic that frustrates many PRP patients and caregivers. We must find a way to have dermatologists provide patients diagnosed with PRP a referral to PRP patient support resources. When a dermatologist in the US renders a diagnosis of pityriasis rubra pilaris, a diagnosis
Why are PRP patient resources a secret? Read More »
by Bill McCue (August 2017) What does holly have to do with pityriasis rubra pilaris? And what does holly have to do with HOPE and REMISSION. Let me explain. My house has holly bushes; too many holly bushes. Oh, how I hate holly bushes! But they look great from afar. Dark green. Lush green. But
I hate holly more than PRP Read More »
From the Editor… The use of efficacy of nitrile gloves by PRP patients is well documented within the PRP community. Of course, the information is scattered hither and yon. The purpose of this page is to gather feedback from PRP patients and caregivers for newcomers. What are nitrile gloves? The Safety Zone is one of
PRP and Nitrile Gloves Read More »
From the Editor … The alternate spelling of humor/humour is a courtesy to the PRP communities in the UK, Canada, Australia, New Zealand – any where PRP patients and caregivers (carers) require extra help to find this page. (That was a joke!) Please use “Leave a Reply” to submit your PRP-related humor/humour. Murray R –
PRP Humor and Humour Read More »
From the Editor… How is malware related to PRP and coping strategies? Let me try to explain. By the way – reading this article will NOT cause a malware attack. It was a dark and stormy night (two weeks ago) when a member of the PRP Facebook Support Group posted a question about the efficacy
How Fragile We Are Read More »
From the Editor… PPR research is an ongoing effort. The PRP Survival Guide will attempt to provide updates to the worldwide PRP community. Wednesday, July 5, 2017 Thomas Jefferson University is accepting blood samples for PRP-related research. Thomas Jefferson University is at a point in their PRP research where they need blood samples from the
PRP Research Update Read More »
From the Editor… If pityriasis rubra pilaris is, in fact, an autoimmune disease, then supporting the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance join. It became clear, however, that it was the
AARDA does not considers PRP an autoimmune disease Read More »
From the Editor… The Genetic and Rare Diseases Information Center once again provides patient-friendly information. Their “coverage” of autoinflammatory Diseases meets that standard. The following information is dated January 2017. If you REALLY want to know about autoinflammatory diseases, this is worth a cup of coffee and some “Quiet Time”. Autoinflammatory diseases are a relatively
Understanding Autoinflammatory Diseases — GARD Read More »