A Roadmap for your Journey from Onset through Remission
It took three months and a week of hospitalization for Bill McCue to be “officially” diagnosed with pityriasis rubra pilaris (PRP). Sound familiar?
On November 28, 2012, his dermatologist’s office called to confirm the diagnosis and schedule an appointment for the following day to discuss treatment. When the telephone call ended, Bill stared at a Post-It where he had scribbled the proper spelling of pityriasis rubra pilaris.
That evening, the newbie performed the newbie ritual — a series of Google searches where he devoured two dozen healthcare-related websites. Unfortunately, the information he uncovered was limited in scope and redundant in content. Even more disconcerting, however, was a presumption that he was somehow familiar with medical terms. Arrgh!
Sometime during the early morning hours of November 29, as Bill became overwhelmed by his own ignorance, he concluded: “I need to find a PRP Survival Guide.”
There wasn’t one. So he started writing it.
The PRP Survival Guide reflects the PRP-related experiences as reported by patients and caregivers who are members of the PRP Facebook Support Group and PRP Community on RareConnect. The PRP Survival Guide is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information to better understand their disease and treatment options.
The PRP Survival Guide is divided into eight CHAPTERS. Each section within each chapter seeks additional FEEDBACK from the PRP community and healthcare professionals.
✽ Chapter 1 — Just the Basics
✽ Chapter 2 — Diagnosing PRP
✽ Chapter 3 — Treating PRP
✽ Chapter 4 — Daily Life with PRP
✽ Chapter 5 — PRP Parents and Kids
✽ Chapter 6 — Remission and PRP
✽ Chapter 7 — PRP Research
✽ Chapter 8 — PRP Advocacy