The PRP Survival Guide began in November 2013 as a series of webpages included on the PRP Alliance website. While the basic organization has remained the same, the content has relentlessly expanded to over 400 “articles” representing thousands of pages. The primary target audience for the PRP Survival Guide has always been patients diagnosed with pityriasis rubra pilaris and their caregivers. The secondary audience includes families, friends and healthcare professionals beyond the ranks of dermatology, e.g., general practitioners, ENT specialists, podiatrists, endocrinologists, mental health specialists, etc. It is also hoped that both PRP patients and their caregivers will share their PRP-related experiences and insights using the Leave-a-Reply feature at the end of each webpage to help us all better understand our disease.
Bill McCue — Editor
These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers, family and friends, co-workers and employers, teachers and school administrators, and so many more.
Understanding PRP — Chapter 1
★ The NORD PRP Report (circa 2017) PDF download
★ The GARD PRP Report (circa 2017) PDF download
✓ What is PRP? (Multiple sources: DermNetNZ, Medscape, etc.)
✓ The history of our name (pityriasis rubra pilaris)
✓ Do we know what causes PRP?
✓ Is PRP contagious?
✓ What constitutes a rare disease?
✓ The Dowling Oration (pdf)
✓ The Dowling Oration — What’s Missing?
✓ What were my odds of getting PRP?
✓ How do we track the worldwide PRP community
Diagnosing PRP — Chapter 2
★ How is PRP diagnosed?
★ What are the symptoms and signs? (NORD PRP Report)
✓ What are the symptoms of PRP? — The Word Game
✓ How do PRP symptoms progress?
✓ Why is it so difficult to diagnose PRP?
✓ How can I be sure the diagnosis is correct?
Treating PRP — Chapter 3
Daily Life with PRP — Chapter 4
PRP Parents and Kids — Chapter 5 (under construction)
What are the challenges facing PRP parents? (pending)
PRP and Remission — Chapter 6
PRP Research — Chapter7
PRP Advocacy — Chapter 8
Chapter 1 — The Basics INDEX A00