A Roadmap for Your PRP Journey
Every PRP journey begins with a symptom or a sign. Days, weeks, months or even 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 one out of 400,000 people, the spot, the rash and/or the itch signals a one-of-a-kind journey that spawns more questions than answers.
Fortunately, you 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 what they learn. 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), there are “basic questions” at the core of understanding PRP. This is a good place to start.
TREATMENT
From the patient perspective there are three observations to be made about treating pityriasis rubra pilaris.
Each PRP journey is unique
Each PRP journey is predictably unpredictable
You are not alone. There is a PRP global community
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. The PRP Survival Guide offers 100 topics ranging from ALCOHOL to WORKPLACE that reflect the collective insights and observations of the global PRP global community.