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 »
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 »
EDITOR’S NOTE: As a global community with over 2,200 PRP patients, my concern is that information about COVID-19 — as it specifically relates to pityriasis rubra pilaris — will find its way on the PRP Facebook Support Group webpage as a post, comment or reply only to be lost or buried. To date, we have had only ONE report of any PRP patient —
COVID-19 Clearinghouse for PRP Read More »
From the Editor… A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission. ✽ Ability to sweat ✽ Return of fingernails to pre-onset glory ✽ Return of hair ✽
PRP Facebook Membership Milestones Read More »
From the Editor… PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to editor@prpSurvivalGuide.org. The focus here is on treatment options (prescription drugs and
Chapter 2 — Treating 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 »
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 »
Editor’s Note… On November 22, 2017, Sharyn B (Gold Coast, Queensland, Australia) posted the following message to the PRP Facebook Community. Members can CLICK HERE see the original, unedited version of Sharyn’s post and feedback. “I’ve been told to moisturise at least three times a day. I don’t shower everyday (which is excruciating as i
When moisturizers cake Read More »