Thank You For Being Counted
Thank you for sharing your information. Bill McCue, Founder/President PRP Alliance, Inc.
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Remission
Why Donate Now?
Let’s start with a little history. When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first recorded patient with what the medical community would eventually call pityriasis rubra pilaris. Fast forward 169 years. The PRP community has only been around since late 1997 when a
Pityriasis Rubra Pilaris Draft for NORD
ACKNOWLEDGMENT NORD gratefully acknowledges the following for their assistance in preparing this report: Mark Lebwolh MD, Chairman, Dermatology Department, Icahn Medical School, Mount Sinai Hospital, New York, NY; Jouni Uitto MD, PhD Professor and Chair, Department of Dermatology and Cutaneous Biology. Thomas Jefferson University, Philadelphia, PA; Nicholas A Ross, MD, Lead Investigator and Resident Physician,
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PRP Awareness Month
From the Editor… My first PRP Awareness Day was November 28, 2012 and quite “unofficial” by any standards. It began with a phone call from my dermatologist’s office. I was told that the appearance of a red spot on my forehead on August 8 — nearly four months prior — had been the onset of pityriasis rubra pilaris. Like
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I hate holly more than PRP
by Bill McCue (August 2017) What does holly have to do with pityriasis rubra pilaris? And what does holly have to do with HOPE and REMISSION. Let me explain. My house has holly bushes; too many holly bushes. Oh, how I hate holly bushes! But they look great from afar. Dark green. Lush green. But up
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Asking Dr. Google?
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
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The MANY definitions of remission
From the Editor… There does not appear to be an official definition of REMISSION as it applies to pityriasis rubra pilaris. REMISSION comes from the Latin remissionem, meaning “relaxation, a sending back.” If something difficult lets up, you’ll be able to relax a little. Here are some definitions to ponder. When you are finished, share
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Remission Survey
05.00.03 Pre Remission Survey On April 8, 2014, exactly 20 months since a pesky red spot appeared on my forehead, I was declared in remission by Dr. Arturo Dominguez. In that moment I transitioned into a phase of PRP that I had only viewed from afar. My want to know became an immediate need to
What are the issues related to remission?
Editor’s Note: It is generally accepted that 90 percent of all patients diagnosed with pityriasis rubra pilaris will achieve remission. Unfortunately, there is no universally accepted definition of remission. For purposes of discussion, we will define remission as “symptom-free and med-free”. There has been no research regarding PRP and remission. The PRP community must
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What is my long-term outlook based on Type?
Editor’s Note: The long-term prognosis for PRP is not set in stone. There are some guidelines that dermatologists feel comfortable in treating as Gospel. Suffice it to say that there has been insufficient research to be able to predict when Type 1, 3 and 5 will “run it’s course.” Adult Onset PRP Type 1 — Classical
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