How to tell your story

This webpage is a Work in Progress.

Whether you are a patient or caregiver, you should be prepared to tell your story to others? When your audience is a loving member of your family, appreciate the fact that they care. You control the narrative. 
There are three types of stories to be told:

  • The Quick Response (30 seconds) — Sometimes called the “Elevator Presentation”. Just enough to satisfy someone’s curiosity
  • The Brief Overview — Just a little more meat on the bone” as they say.
  • The Clinic Visit — Information that a healthcare provider needs to know. Don’t be shy!
  • A Journal — Photos and notes.
  • Sharing with the PRP Facebook Support Group — The more we care, the more we share. The more we share, the more we all learn…about each other and ourselves.


Here are four sentences that you say with confidence:

  1. “I have a rare skin disorder that is not contagious.”

    Get the word rare up front. Use disorder rather than disease and confirm that your disorder is not contagious.

  2. “It’s called pityriasis rubra pilaris, but we call it PRP.”
    Say “pityriasis rubra pilaris” slowly and you won’t have to say it again.
  3. “There are only an estimated 832 of us in the United States and less than 74 in Texas.”

    The words “only” and “less than” reinforce the rarity of PRP. Actually, there are an estimated 73 PRP patients in Texas, but using “74” and “less than” reinforces the rarity of PRP. While one in 400,000 “sounds rare”, it is a statistic that bounces off the brain of most listeners.

  4. “PRP impacts my…”

    Here’s where you decide what to share. You can describe what are issues with which you must deal, e.g., impaired mobility, dexterity, hearing, vision, etc.


Future — When completed, this will be an expanded version of the QUICK RESPONSE appropriate for an audience with a NEED and DESIRE to know more. They care deeply about you.


Future — What information should you be sharing with your healthcare professionals. This would be information you KNOW because you are the expert in your version of PRP. This is the information you share with your dermatologist and other healthcare professionals because they have NEVER had a patient with your version of PRP.

In addition to the NORD PRP Report. GARD PRP Report and the Top 1 Questions, the following webpages will fill in some gaps.

  1. What constitutes a rare disease? 

  2. What is the PRP Global Community?  We are rare but not unicorns. (PRP Global Database)

  3. The 30-second response  to rude people. PRP is not contagious?

  4. What is the history of the name? Who is James Shooter?   Demonstrate your PRP savviness to your dermatologist.

  5. The Dowling Oration (circa 2006) — Relevance today? 

  6. The folly of asking Dr. Google about PRP

  7. Anatomy of Skin — Overview

  8. How to pronounce pityrias rubra pilaris

  9. Rule of Nines

THE JOURNAL (future)