A Roadmap for your Journey from Onset through Remission

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IMG Highway Roap Mao 500x250The PRP Survival Guide began as a red spot on the forehead of a 66-year-old, retiree. That was August 8, 2012.

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.

PATH FORWARD

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.

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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

CLICK HERE to learn how to use the PRP Survival Guide.

Third-Party Website Disclaimer

The PRP Alliance’s website offers links to third-party websites and resources. Such links are provided as a convenience to you and for informational purposes only. The PRP Alliance neither endorses nor recommends any product or treatment. The information provided within these links and/or other materials can be found on our site as well as others, and we are not responsible for and do not endorse the products, information, and/or services offered by any third party. Third party websites and resources are not bound by our policies, although they may have their own, or none at all. We encourage you to read the policies of third-party websites prior to engaging in any activities with them.