From the Editor…Rather than lament the forced hiatus of the PRP Survival Guide and watch Game of Thrones, I have decided to tweak “The Basics” a wee bit. Okay…more than a wee bit.
To ancient Greeks and Egyptians the mythical Phoenix was a symbol of renewal and rebirth. While the magnificent Phoenix lived for 500 years, only one Phoenix lived at a time. According to legend, just before its death, the Phoenix built a nest and set itself on fire. It was then that a new Phoenix would rise from the ashes.
The PRP Survival Guide website has been our Phoenix for over five years. It may be time for a rebirth.
OVERVIEW
The NORD PRP Report (National Organization of Rare Disorders) and the GARD PRP Report (Genetic and Rare Diseases Information Center, National Institutes of Health) provide PRP patients and caregivers with an easy-to-understand overview of pityriasis rubra pilaris.
IMHO — these two reports should be required reading for patients, caregivers, extended family and friends. Both the NORD PRP Report and the GARD PRP Report include a Google Translate button for those where English is a challenge. IMPORTANT: PRP patients and PRP caregivers should be encouraged to share the link to the 5,000-word NORD PRP Report — with its translate button — with family and friends.
TOP 10 QUESTIONS
The following 10 questions fall under the heading: What PRP patients and caregivers WANT to know. This is also provides an opportunity to introduce four other sections of the Survival Guide, e.g., Diagnosis, Treatment, Daily Life and Endgame.
- Is there any chance of a misdiagnosis? Intro to DIAGNOSIS
- What are the odds of getting PRP?
- Do we know what causes PRP? What are the genetics of PRP? Is it hereditary?
- Is PRP an autoimmune or an autoinflammatory disease? Includes: Understanding autoinflammatory diseases (GARD)
- Is there a cure for PRP? Intro to TREATMENT
- How do PRP symptoms progress? (phases & stages)
- What are the impacts of PRP? Intro to DAILY LIFE
- How does healing progress? (See Milestones)
- What does a PRP parent need to know?
- How long will my PRP last? (duration) Intro to ENDGAME
HOW TO TELL YOUR STORY
Editor… Whether you are a patient or caregiver, you should be prepared to tell your story to others? Your audience may be a loving member of your family or a rude and insensitive onlooker in the checkout line at Walmart. Let’s make sure that your ducks are lined up.
- What constitutes a rare disease?
- What is the PRP Global Community? We are rare but not unicorns. (PRP Global Database)
- The 30-second response to rude people. PRP is not contagious?
- What is the history of the name? Who is James Shooter? Demonstrate your PRP-savvyness to your dermatologist.
- The Dowling Oration (circa 2006) — Relevance today? (pdf)
- The folly of asking Dr. Google about PRP
- Why are PRP patient resources so hard to find?
- Anatomy of Skin — Overview
- Coverage: The Rule of Nines
- The importance of patient self-advocacy
PRP RESOURCES
Editor… The following resources should be shared with your dermatologist during your next clinic visit. He or she should be encouraged to share the information with other PRP patients.
PRP GLOSSARY OF WORDS & JARGON
Ideas to Ponder
❏ NORD PRP Report — PDF
❏ Top 10 Questions — PDF ebook
❏ “Tell Your Story” Flash cards — Download/Print
❏ How to tell Your PRP Story — Video
❏ PRP Resources — PDF for dermatologists
❏ PRP Glossary of Words and Jargon — PDF ebook