papa.bill

WE ARE NOT ALONE by Bill McCue It was a Saturday morning in April 2016 when I realized that too many of my PRP friends in the Land of Hope were suffering too much pain. My house was empty and I felt like writing.xThere was a time with PRP,I thought it had the best of […]

I saw a spot, just a little dime It was November 2013. I was 16 months into my PRP journey and five months from reaching remission. Since there is no universally accepted definition of remission within the PRP community, I applied my own: med-free and symptom-free. I shared the poem with about 500 PRP patients

Rules & Practices Over the years the PRP Survival Guide has developed Editorial Standards. For example, I always try to put the PRP Survival Guide and pityriasis rubra pilaris in italics.A recent post i the Land of Hope seemed to be a perfect place to start listing the editorial standards that help explain PRP. Disease

  The 30-second answer Bill McCue, Editor It took 16 weeks for a dermatologist and a dermatopathologist to agree on my diagnosis: pityriasis rubra pilaris. A few days later I began a daily regimen of acitretin and  physically exhausting “slatherings” of Clobetasol® and urea lotion (palms and soles), Desonide® (face and ears) and triamcinolone in

PRP Awareness Advocacy Challenge PRP Petition Project: Planning While the PRP global community lacks the political clout and financial resources of patient organizations supporting more common skin disorders like the National Psoriasis Foundation. However, we have attended international conferences, participated in workgroups,  and found ways to make our presence known. We need to sharpen our