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I hate holly more than PRP! by Bill McCue (August 2018) 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. […]

You Don’t Have To Do It Alone!Principle 5 Editor’s Note — The official unveiling of Principle 5 is scheduled for February 2, 2023.   

PRP and DIAGNOSTIC CODING ICD Coding for Rare Diseases from GARD Does your rare disease have a code? Were dermatologists ready for ICD-10? What is the ORPHA Number for PRP

How is pityriasis rubra pilaris pronounced? This is not as stupid a question as it might sound. When a dermatologist confirms the diagnosis as “pityriasis rubra pilaris or PRP” we too often hear only the acronym “PRP”.  That’s easy to say. I confirmed the proper spelling of pityriasis rubra pilaris from the paperwork I brought home from the

Tales from the Open Road The PRP Survival Guide is designed to be 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. Only we can harvest that knowledge. Tell us your story. Share what you have learned as a patient diagnosed with

From the Editor… When it comes to managing expectations, a newly diagnosed PRP patient will eventually realize that the flaking skin cascading daily from their body will fall victim to gravity. While hardwood floors are relatively easy to clean, the carpeted areas of a PRP domicile are more of a challenge. Over the years I have heard tales

Issues related to pets and animals This issue of PRP, pets and animals was recently discussed in the Land of Chat (PRP Facebook Support Group). An effort will be made during PRP Awareness Month (November 1-30, 2020) to harvest the observations of the PRP global community.   Tierney R (Virginia Beach, Virginia) created a poll on

Nose and nasal-related issues Here’s what we already know. A runny nose is a common occurrence among PRP patients. A runny nose is yet another indignity thrust upon us as we journey forward. According to the Mayo Clinic, a runny nose is excess nasal drainage. It may be a thin clear fluid, thick mucus, or something in

PRP and Work-Related Issues While I faced the typical and predictable challenges to body, mind and spirit all PRP patients face, there was one major exception: the workplace. I was retired when the “Red Bastard†came knocking on my door in August 2012 Every PRP journey is unique. For many PRP patients the onset of

Issues related to flares The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge. Share what you have learned about flares and setbacks. Share articles you feel