Editor’s Note: (1) Comments highlighted in boldface purple reflect the first 100 responses to the Onset to Diagnosis Survey, (2) There are links to “selected comments”. (3) Question #8 has be “tweaked” for clarity. . CLICK THIS LINK TO BYPASS THE PREVIEW AND GO DIRECTLY TO THE SURVEY YOU are being asked to make history. For our global PRP community, history […]
ON to DX Retrospective Study Read More »
How is pityriasis rubra pilaris pronounced? This is not as stupid question as it might sound. When a dermatologist confirms the diagnosis as “pityriasis rubra pilaris or PRP” we too often hear only the acronym “PRP”. That’s easy to say. I confirmed the proper spelling of pityriasis rubra pilaris from the paperwork I brought home from the dermatology
From the Editor… The light has finally been turned on. As of September 20, the National Organization of Rare Disorders (NORD) has replaced the 2007 PRP Report with the 2017 revision. We now have a beacon of hope for PRP patients and caregivers to find as they travel the uncharted waters of pityriasis rubra pilaris.
Genesis of the NORD PRP Report Read More »
Those who spend time any time reading the PRP Survival Guide or perusing the posts and comments shared by members of the PRP Facebook Support Group will see references to the challenges to body, mind and spirit associated with pityriasis rubra pilaris. PRP is a burden on every square inch of our bodies. Moreover, our minds must
What are the challenges of PRP? Read More »
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 »
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 spelling of pityriasis rubra pilaris. That evening
How to Use the PRP Survival Guide 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 »
Updated: 06/19/2020 Message from the Editor The onset of my version of PRP began in early August 2012 with the sudden appearance of a small, red spot on my right temple near my hairline. Within a week the “inconsequential” spot had grown in size — enough to prompt a call to my dermatologist. By early September the side of my
PRP Community Resources Read More »
There is no excerpt because this is a protected post.
Protected: PRP Profile: Bill McCue Read More »