PRP Alliance

 

A Roadmap for Your PRP Journey

Every PRP journey begins with a symptom or a sign.  Days, weeks, months or years may pass before there is a definitive diagnosis and we hear a healthcare professional utter the words “pityriasis rubra pilaris”.The onset of PRP can be as small as a red spot (size of a dime) on a forehead … or it can appear as an angry rash that assaults us like a would-be mugger in a dark alley … or it may start as an annoying and persistent itch on a foot. But for the one out of 400,000 people, the spot, the rash and the itch signals a one-of-a-kind journey that spawns more questions than answers.

Fortunately, we are not alone. A global army of PRP patients and their caregivers are ready to share their insights and observations. Together we learn how to navigate this journey as a family of kindred spirits.

The PRP Survival Guide exists because PRP patients and caregivers share their PRP-related insights and observations. PRP is a 24-hours-a-day, seven days a week journey.  It is because PRP patients and caregivers share that we are able to learn from one another.

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.

Welcome to the PRP Survival Guide.
We are here to help
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