Survival
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.
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.
Basics
The PRP Survival Guide begins 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. This is a good place to start.
Treatments
- Each PRP journey is unique.
- What works for one doesn’t work for all.
- You are not alone. There is a global PRP community.
Daily Life
There are daily challenges to body, mind, and spirit encountered by all PRP patients. Over 100 topics range from ALCOHOL to WORKPLACE and reflect the collective insights and observations of the PRP global community.
Advocacy
PRP is a rare skin disease that mimics more common maladies like psoriasis and eczema. Advocacy is the only way we can rise above the noise level.
We must rise above the noise level.
How Rare is Rare?
In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons. International definitions of rare diseases vary. For example, in the UK, a disease is considered rare if it affects fewer than 50,000 citizens.
According to the National Institutes of Health there are over 7,000 rare diseases worldwide. Of those, 591 are RARE SKIN diseases. With a prevalence of one in 400,000, pityriasis rubra pilaris is über rare
The PRP global community faces a daunting challenge. How do we rise above the above the noise level of more common dermatological conditions? How can PRP compete with atopic dermatitis and psoriasis for research dollars. Consider the patient populations in the U.S.
- Atopic dermatitis: 32 million
- Psoriasis: 7.5 million
- PRP: 829
PRP-specific research projects undertaken over the past eight years can be counted on one hand. Recently, however, the PRP Alliance has had the opportunity to facilitate PRP-specific through Oregon Health and Science University.
The PRP Alliance is always seeking PRP Advocates — patients and caregivers who want to step up and get involved. Help us rise above the noise level. Learn more about PRP Advocacy. Contact Bill McCue.
- 60-Second PRP Roadmap — Peer Review Workbook
- 60-Second PRP Roadmap — Overview
- 60-Second PRP Roadmap — Treatment Options
- 60-Second PRP Roadmap — Quality of Life