Our Journey from Onset to Remission

The onset of pityriasis rubra pilaris (PRP) can be a tiny red spot on a forehead. Or, it can appear as an angry rash that assaults like a mugger in a dark alley. Or it may start as an itch on the foot — annoying at first,  but viciously persistent with each passing day.

For one out of 400,000 people, however, the spot, the rash or the itch signals a one-of-a-kind journey that begins with more questions than answers.

Fortunately, you are not alone on this journey. A global army of PRP patients and caregivers are ready to share their personal insights and observations.

The PRP Survival Guide is an ever-expanding repository of PRP experiences.

Because we care, we share. And it is because we share that we all learn from one another.

For the best user experience we recommend that PRP patients and caregivers use Chrome, the free web browser from Google.

Welcome to PRP Survival Guide. 


BASICS

We begin with the basics. Whether you are a newly diagnosed patient, “seasoned traveler” or supportive caregiver (spouse, partner, parent, member of the family or friend),  the “basic questions”  are at the core of a basic understanding of pityriasis rubra pilaris. A good start.


DIAGNOSIS

When a dermatologist enters the diagnostic code for pityriasis rubra pilaris into your medical record (L44.0 ), it’s official. However, if you now question the accuracy of that diagnosis, this section offer insights.


TREATMENT

From the patient perspective there are three observations to be made about treating pityriasis rubra pilaris. (1) Each PRP journey is unique. (2) You are not alone. There is a global PRP community. (3) What works for one doesn’t work for all.


DAILY LIFE

There are daily challenges to body, mind, and spirit encountered by all PRP patients. Nearly 100 topics range from ALCOHOL to WORKPLACE reflect the collective insights and observations of the global PRP community.


ENDGAME

For most PRP patients and caregivers, a diagnosis of pityriasis rubra pilaris is life-altering. In the absence of a universal definition, we ponder remission versus long-term management.


RESEARCH

Compared to other more common skin disorders, PRP has very little research in the pipeline. PRP-specific research projects over the past eight years can be counted on one hand. Learn how PRP patient and caregivers have rallied to support PRP researchers worldwide.