A Roadmap for Your PRP Journey
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.
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.
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.
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.
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.
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.