February 5, 2019
Hours before the expiration of our domain name, I renewed prpAlliance.com for the sixth year. In the weeks ahead I will renew prpAlliance.org and prpSurvivalGuide.org. There is no better time to revisit genesis of the Global PRP Community.
The Road to a New PRP Community details what I saw in my mind’s eye in October 2013. I ask you to compare my vision then to what has been accomplished thus far and what can be accomplished in YEAR SIX.
Bill McCue
The PRP Alliance began as an idea hatched during the time when my days were a never-ending succession of drugs, ointments and creams. When the infrequent calm of the day was interrupted with unrelenting itching. When any movement, no matter how slight, stuck a metaphorical knife into already sensitive nerve endings.
Some how, during the mayhem of PRP, an idea began to emerge. Within a very short time the idea dominated my day. Eventually the pain of PRP became almost irrelevant because I had found a way to fight the Red Monster. I could literally laugh at that red bastard. I had a plan.
Registering the prpAlliance.com domain name on February 6, 2013 was a singular act of defiance. As a citizen of the PRP Community it was my form of civil disobedience. I had had enough of my own self-pity. I had been hunkered down. I had been in survival mode. I had been perpetually on the defense. It was time to go on the offense.
My vision of a new PRP Community began to take shape in July 2013. I wanted to find out how often–and for how long–PRP is misdiagnosed. In my case it was misdiagnosed for nearly three months and mistreated with prednisone. The correct diagnosis of my version of PRP only came after hospitalization and four biopsies. By then I was in full bloom. Every square inch of my body was red. I was a 250-pound strawberry.
By the middle of August I had collected biopsy data representing 256 PRP patients from the PRP Support Group archives and respondents to my own PRP Biopsy Poll. That data confirmed to me that a timely diagnosis of pityriasis rubra pilaris was due to the diagnostic skills of an enlightened dermatologist. Conversely, it was an unfamiliarity with the symptoms of PRP that the most egregious examples of misdiagnosis and mistreatment.
It was a frightening revelation when supported by data. We have a rare disease that requires an enlightened dermatologist for a timely diagnosis. Dermatologists may be knowledgeable about many skin maladies, but PRP is certainly not one you can count on. Pityriasis rubra pilaris is not on their radar.
I wanted to know more about my fellow PRP patients. My path forward led me to conduct a PRP worldwide census. On November 6, 2013 the first of 20,000 emails was sent. The response by 403 PRPers supported the findings of the PRP Biopsy Poll.
It was during Rare Disease Day (February 28, 2014) that I had the opportunity to compare the PRP community with other rare disease communities. We had a website and two support groups. What we didn’t have was a newsletter to build channels of communication within the PRP Community, a community that includes:
❏½ All PRP patients: active and in remission
❏½ All caregivers and “Circles of Support”
❏½ PRP-savvy dermatologists who have diagnosed and/or treated PRP. They are the lynchpins in the enlightenment of their peers
❏½ PRP researchers like Dr. Jouni Uitto and his team at Thomas Jefferson University
❏½ “Kindred organizations” with experience and resources to help us do a better job