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 […]
Objective To conduct an outreach effort to dermatologists, dermatology physician assistants, and dermatology nurses.j Problem to be addressed When a patient is diagnosed with PRP, the dermatologist – with rare exceptions – does not refer the patient to the PRP Alliance, PRP Facebook Support Group, the PRP Community on RareConnect or to the PRP Survival
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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,
Pityriasis Rubra Pilaris Draft for NORD Read More »
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
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From the Editor – DRAFT The following is a discussion about a topic that frustrates many PRP patients and caregivers. We must find a way to have dermatologists provide patients diagnosed with PRP a referral to PRP patient support resources. When a dermatologist in the US renders a diagnosis of pityriasis rubra pilaris, a diagnosis
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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
Asking Dr. Google? Read More »
NOTES Describe Juvenile Onset PRP ❏½ We want to describe Juvenile Onset PRP rather than PRP in general ❏½ This should be a general overview and include Type 3, 4 and 5 ❏½ What are the SPECIFIC challenges facing PRP parents and PRP children? Describe your child’s version of PRP ❏½ We want to describe
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From the Editor… For any PRP parent with a PRP kid in need of a summer experience in a PRP-friendly environment, consider Camp Discovery. What they say about themselves: Camp Discovery was founded in 1993 and offers a summer camp experience like no other. Every summer, the American Academy of Dermatology sponsors six weeks of
American Academy of Dermatology Summer Camp Read More »
From the Editor… For those who accept the prevalence estimates established by Dr. Griffiths in March 2003, juvenile onset PRP represents 45% of the patient population. The PRP Community Census has Identified 149 PRP patients who have reported a diagnosis of juvenile onset PRP. Considering the fact that 817 PRP patients have not indicated whether
The PRP Patient Population — Juvenile Onset Read More »
From the Editor On June 11, 2017, a PRP parent posted the following message. It has been re-posted in the PRP Survival Guide in hope that other comments will be added over time. April T – Terryville, CT My son, Blake, who is 7 years old, has had PRP since he was 6 months old.
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