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
What are the challenges of PRP? Read More »
It is especially fitting that the global PRP community celebrate the life of Tierney Ratti and a her nearly half-century PRP journey. While the symptoms of PRP first appeared in 1972 at the age of 11, it wasn’t until November 1994 before she reached out to the National Organization of Rare Disorders in search of
Tierney Ratti Memorial 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
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
COVID-19 Clearinghouse for PRP Read More »
Editor’s Note: Each month members of the PRP Facebook Community start between 150 and 200 conversations that range from questions about “what works and what doesn’t work” to general appeals for advice. Since the start of PRP Awareness Month (November 1, 2018), well over 1,200 PRP Facebookers in the Land of Chat have been living
Second Look — April, 2019 Read More »
Editor’s Note: I know that posting the cartoons shared by members of the PRP Global Community probably violates a copyright laws somewhere, but sometimes a good chuckle is worth getting a cease and desist order. Can’t be any worse that the phone call I received from Dr. Golden’s nurse on November 28, 2012 confirming my
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we can harvest that knowledge. Tell us your story. Share what you have learned as a
PRP Journeys — The Road Less Traveled Read More »
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge. ❏ FEET AND IMPAIRED MOBILITY (You are here!)
*** PRP, Feet and Impaired Mobility 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. ❏½ Ability to sweat ❏½ Return of fingernails to pre-onset glory ❏½ Return of hair ❏½
PRP Facebook Membership Milestones Read More »