EDITOR’S NOTE: While PRP is not life-threatening, it is absolutely life-altering. The journey from onset through redemption is not a high-speed highway with a beautiful view. To the contrary, it can be a treacherous road of pain and discomfort, a seemingly endless series of hills and mountain-like barriers with road blocks and detours to impede your […]
From the Editor The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment. Share what you have learned about the impact of PRP on
Focus on Fingernails Read More »
Chapter 3 of the PRP Survival Guide has been revised. Please go to DAILY LIFE.
Chapter 3 — Living with PRP Read More »
The PRP Survival Guide has been reorganized. Please go to: PRP 101: The Basics
Chapter 1 — Understanding PRP (redirect) Read More »
From the Editor I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead. Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris. That evening
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From Bill McCue, Editor PRP Survival Guide Tierney Ratti (1961-2020) was a PRP veteran who became the Gold Standard of caring and sharing. Her journey began in 1972 at the age of 11 with the onset of pityriasis rubra pilaris. She was one of the original “Pretty Red People” who traded emails on AOL — You’ve Got Mail. Inspired
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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
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The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset. RareConnect
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Updated: 06/19/2020 Message from the Editor The onset of my version of PRP began in early August 2012 with the sudden appearance of a small, red spot on my right temple near my hairline. Within a week the “inconsequential” spot had grown in size — enough to prompt a call to my dermatologist. By early September the side of my
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