PRP Survival Guide

PRP Roadside Emergency Kit


If pityriasis rubra pilaris is best described as a journey, then we, as travelers, should prepare for the inevitable emergencies that will befall us en route.

✽  NORD PRP Report: Keep two copies: one for you and one for the person with a “Need to Know”. It might be family member, your employer,  a school teacher, or a healthcare provider, e.g., ear specialist, podiatrist, etc. When you hand out the “second copy”, replace it.

✽  Circle of Hope Referral card: For family members, friends, coworkers, employers, teachers, school officials, your family doctor, podiatrist, ophthalmologist, ENT specialist and other healthcare professionals. Offer a card with the website addresses for all three resources, e.g., PRP Survival Guide (PRP 101), PRP Patient-Friendly Glossary of Word, Terms & Jargon, and the PRP Facebook Support Group.

✽  PRP ID card: Name, Location, Onset Date, Onset Age, Status (Active or Remission); Remission Date (if applicable). Don’t be ashamed of your PRP. Among fellow PRP patients, for redness is our Red Badge of Courage. When someone says something hurtful or thoughtless, smile and give them the card — and include a smile.

✽  Dermatologist ID: Name and contact information.

✽  PRP Patient Journal for note taking. Bring this to every dermatology clinic visit or any interaction with any healthcare professional where the topic of PRP is included.


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