7-PRP Advocacy

The Changeling Took My Skin   By Abbie Cotrell, San Antonio, Texas Editor’s Note Abbie Cotrell’s PRP journey began in November 2005 at the age of 61. Initially active with the original, email-based PRP Support Group, she became a member of the PRP Facebook Community in 2011. In June 2013, she reached the offramp from her […]

From the Editor… When I was diagnosed with pityriasis rubra pilaris on November 28, 2012, my evening was spent searching the internet. I was not pleased with the redundancy, medical jargon and “rat holes” into which I fell. At some point that evening I accessed a 1,200- plus word overview of PRP. Even though it had not

How to calculate PRP Coverage “The Rule of Nines, also known as the Wallace Rule of Nines, is a tool used by trauma and emergency medicine providers to assess the total body surface area (TBSA) involved in burn patients.  Measurement of the initial burn surface area is important in estimating fluid resuscitation requirements since patients

Editor’s Note — PRP Awareness Month is six months away. There’s plenty of time to advance the interests of the PRP Global Community. ligula, eget egestas tortor tempor venenatis. Vestibulum id leo sit amet erat eleifend fringilla. Vestibulum fringilla lacinia lacus sit amet consequat. Mauris tortor leo, hendrerit vel imperdiet at, dignissim eget arcu. UPDATE

Editor’s Note: This webpage focuses on the PRP Global Database as of April 31, 2019, the PRP-related data we capture, and why the data is important to every member of the PRP global community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare professional, the data we have amassed

What is the Rare Skin Disease Referral Initiative?   And WHY Texas? Pityriasis rubra pilaris is one of 574 rare skin diseases. In fact, with a prevalence of only one in 400,000, there are only an estimated 812 patients under treatment in the U.S. When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist — with

    “How long does it take to get from ONSET to REMISSION?” It’s a pretty common question whether the PRP patient has been diagnosed with Adult Onset PRP or Juvenile Onset PRP. When James Shooter walked into St. Bartholomew Hospital in 1828, our disease didn’t have a name. However, I venture that he askednhisdoctor: “How long will

Stewart Littlejohn Versus Her Majesty’s Courts and Tribunal Services From the Editor — Stewart Littlejohn has had PRP since June 2017. Unable to work as a chauffeur, he requested UK Employment Support Allowance. Her Majesty’s Courts and Tribunal Service properly convened a 3-person panel to decide Stewart’s fate. The following memorandum was carefully crafted by the PRP Alliance to help

From the Editor (updated 10/16/2020) — The PRP patient database began during the summer of 2013 and has grown to include 2,240 records of which 1,860 are members of the PRP Facebook Support Group and 380 are non-aligned but have a valid email address. Each PRP patient profile focuses on seven datapoints we classify as CORE DATA. 1. Name: Bill McCue (pt) If

Every so often a member of the PRP Facebook Community shares an inspirational message that should be saved for others to experience. This is the webpage where such messages can be archived for all. The message which has been embedded in the graphic is repeated beneath the image to facilitate translation into over 100-plus languages. See the TRANSLATE button