Chapter 2 — Diagnosing PRP INDEX

This chapter covers the onset of symptoms, misdiagnoses, biopsies as a diagnostic tool and what it takes to get an “official” PRP diagnosis. For most of us, this is looking back to see how our experiences compare with others in the PRP community.

The Basics

✓  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?
✓  Is PRP an autoimmune disease? AARDA says “No”
✓  Is PRP autoinflammatory or autoimmune?
✓ Understanding autoinflammatory diseases (GARD)
 Should we join the Autoinflammatory Alliance?
 What are the variations “types” of PRP?
 How important is it for you to know your type?

PRP and Skin Biopsies

 What is a skin biopsy?
 Why have a skin biopsy?
 What are the types of skin biopsies?
 What should the patient know about skin biopsies?
 What are the risks associated with a skin biopsy?
 How is a biopsy performed?
 What happens to the biopsy sample?
✓ What did we learn from the 2013 PRP Biopsy Poll?
 Overview of the 2013 PRP Biopsy Poll with Feedback

Misdiagnosing PRP

 Are diagnostic errors common a common medical mistakes?
 ✓ Is PRP part of the Psoriatic Continuum?
 Measuring misdiagnosis
✓ Study: Getting 2nd Opinion
✓ What is the Iatrogenic effect?
 What are the life threatening aspects of a PRP misdiagnosis?

PRP and Diagnosis Codes

✓ ICD Coding for Rare Diseases from GARD
✓ Does your rare disease have a code?
✓ Were dermatologists ready for ICD-10?
 What is the ORPHA Number for PRP?

Advocacy of Timely & Accurate Diagnoses

 Advocacy Issues related to diagnosing PRP

Chapter 2 — Diagnosing PRP INDEX


5 Replies to “Chapter 2 — Diagnosing PRP INDEX”

  1. From
    Cynthia Nauman (
    My son was just diagnosed with Pityriasis Ruba Pilaris.
    We are concerned about the medications he is taking
    and the side effects. The doctor has never treated
    a patient with this disease. Is it possible to receive
    a printed copy of the Survival Guide?
    Thank you for your time.

  2. Just read your email. A couple of questions:

    1. Where do you live? I have a database with over 1,700 PRP patients. There may be one of us “just down the road”. I live in Plano, TX (adjacent to Dallas). There may also be a teaching hospital with a PRP-savvy dermatologist on the faculty.

    2. When did you son begin to show the symptoms? How old was he at onset. Some of us develop a skin disorder that is misdiagnosed for months or years.

    3. Do you or your son have a Facebook account. There is a PRP Facebook Support Group (CLOSED & PRIVATE) with over 1,260 members. Lot’s of patients/caregivers who are eager to answer questions. There is also a SEARCH feature that can access posts based on keywords like DISABILITY.

    The PRP Survival Guide has over 400 articles so it doe NOT exist as a book. My project for this summer is to consolidate and index everything.

    Welcome to the PRP Community. Asa rare skin disorder, PRP sucks, but the people you meet along the way share the same challenges of body, mind and spirit that your son faces … and YOU face as a mother.

    — Bill McCue

    PRP Profile: Onset date: August 2012; Onset age: 66; Status: Remission; Remission date: April 2014; Duration: 20 months

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