Chapter 1 — PRP Basics INDEX

 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

 What are the standard therapies? (NORD PRP Report)
 What are the treatment options for PRP?
 How bad is my version of PRP going to get?
 How to find PRP-savvy dermatologist?

Daily Life with PRP — Chapter 4

✓ What are the challenges of living with PRP?

PRP Parents and Kids — Chapter 5 (under construction)

What are the challenges facing PRP parents? (pending)

PRP and Remission — Chapter 6

 What is my long-term outlook based on Type?
 What is the definition of remission?

PRP Research — Chapter7

 Thomas Jefferson University
 Yale University School of Medicine

PRP Advocacy — Chapter 8

 What are the opportunities for PRP advocacy?

Chapter 1 — The Basics INDEX A00

5 Replies to “Chapter 1 — PRP Basics INDEX”

  1. Where do I start?!
    Of course, with the translation button! Perfect! It checked through it in German and it is perfectly readable and understandable (not always grammatical correct – but who needs grammar)!

    The links are working and I love the “Need more?” sections!

    It is written detailed but not overloaded – everything I need to now as a newbie is in.

    I like the suggested links to other related links!

    It is simple and clear – not overloaded with pictures and fancy graphics – but nicely illustrated with carefully chosen pics.

    As a PRP parent I would love to see some “PRP kids” section in Chapter 1 – PRP Basics so that I would have the feeling of “it is ok, breath, you are on a website which is aware of the topic of kids with PRP”. It doesn’t have actually written something in this section: a list of links to the actual “kids” Chapters and sections would be fine with the information that they shall read through all other chapters and sections too because there are information which are related to kids with prp too (like the PRP Types…).

  2. 171137 521338Howdy just wanted to give you a brief heads up and let you know some of the pictures arent loading properly. Im not sure why but I think its a linking problem. Ive tried it in two different web browsers and both show exactly the same outcome. 184656

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