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 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 have learned. 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 understanding pityriasis rubra pilaris. 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.
- You are not alone. There is a global PRP 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 range from ALCOHOL to WORKPLACE reflect the collective insights and observations of the global PRP community.
ADVOCACY
PRP patients can experience three types of advocacy:
- PRP Self-Advocacy. A PRP self-advocate makes informed decisions and then takes responsibility to make those decisions a reality.
- PRP Patient Advocate. Once a PRP patient has the Red Menace under control, the focus shifts to sharing what you have learned with others.
- PRP Advocate. And there are some who see a find ways to impact on a more impactful scale, e.g., spawning PRP research, dealing with the Federal Drug Administration,