It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an […]
A PRP Newsletter Reborn Read More »
by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.
PRP Community Database Update Grant Read More »
. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become
The Right to Say “NO” Read More »
What are the 6 types of PRP? The initial five classifications of pityriasis rubra pilaris were presented to the British Association of Dermatologists in 2003 by Dr. Andrew Griffith, a well-respected London-based dermatologist. His classifications reflected 35 years of diagnosing, treating and researching PRP and have been universally accepted by dermatologists worldwide. According to Griffiths, the PRP patient population can
What are the SIX “types” of PRP? Read More »
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
Asking Dr. Google? Read More »
The National Organization of Rare Disorders (NORD) is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. The PRP Alliance is a
National Organization of Rare Disorders Read More »
THIS ARTICLE IS BEING UPDATED The PRP community has long lamented the lack of PRP-specific research. In October 2012, however, PRP was moved to the front burner in Philadelphia, PA. The Dermatology and Cutaneous Biology Department at Thomas Jefferson University began significant Card14 research with the participation of a few dozen PRP patients. Two years later,
What is the status of PRP research? Read More »
How to find a PRP-savvy Dermatologist It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. While that estimate may be totally bogus, we can say without fear of contradiction that very few dermatologists will consider themselves PRP savvy. There are at least four reasons
How do I find a PRP-savvy dermatologist? Read More »
Treatment options for PRP There is no cure for PRP. Therefore, the goal of treatment is to relieve the symptoms. According to the National Organization of Rare Diseases: “PRP tends to follow a natural waxing and waning course, with episodes in which there is periodic worsening (exacerbation) or cessation (remission) of symptoms.” Source: NORD PRP
What are the treatment options for PRP? Read More »
Editor’s Note: While all patients with PRP share a common core of symptoms, the specific symptoms that patients experience may vary dramatically. PRP causes pink, red, or orange-red scaly patches on the skin — usually everywhere, but not always. But that is just the beginning. Each PRP patient diagnosed with PRP — and their caregiver
How bad is my version of PRP going to get? Read More »