IMPORTANt MESSAGE FOR PATIENTS DIAGNOSED WITH PITYRIASIS RUBRA PILARIS WHO ARE SEEKING THE PRP SUPPORT GROUP.
PLEASE USE THE FOLLOWING LINK:
https://www.facebook.com/groups/1055476976361999
In the beginning…
My name is Bill McCue. A red spot appeared on my forehead in August 8, 2012. My dermatologist misdiagnosed sebborheic dermatitis and prescribed ever increasing dosages of prednisone.
On November 8 a 50mg dose resulted in the appearance of a 20-foot rubber duck in my bedroom, a trip to the ER and a 6-day stay at the hospital.
By the end of November I hired a new dermatologist who suspected PRP. He performed a biopsy and instructed the dermatopathologist to “consider PRP”. Days later I was diagnosed wth PRP and began treatment a week later at the University of Tr[exas, Southwestern in Dallas.
Predictably unpredictable
My PRP journey from onset continued had most of the Quaity of Life impairments we expect, e.g., pain, mobiity, dexterity, fatigue, vision, hearing, thermoregulation, sleep ,and mental wellness.
My treatment plan included acitretin (25-50mg/day) and daily slatering of Desonide (face/ears), Clobetasol (soles and palms) and triamcinolone for the remaining nooks and crannies.
My 20-moth journey ended in April 2014. No meds. No signs. No symptoms.
I was no longer a PRP patient. I became of PRP patient advocate.
PRP Patient Advocate
Whatn do I want to do?
How am I going to doit?
STEP ONE
Archive the entire PRP Survival Guide. It has taken over 12 years to compile 900-plus webpages and chronicle the insights and abservations of over 2,000 PRP patients and caregivers. All this content is being uploaded to a database for easy access and retrieval.
STEP TWO
Archive the entire 60-Second PRP Roadmap. With over 200 PRP-related topics, over 50,000 words and 342 pages, PRP . is presented in seven sections. this content is being uploaded to a database for easy access and retrieval.
- Section 1 — First Questions (30 topics)
- Section 2 — Diagnosing PRP (5 topics)
- Section 3 — Treating PRP (10 topics)
- Section 4 — Quality of Life Impacts (14 topics)
- Sectipn 5 — PRP Self-Advocacy (20 topics)
- Section 6 – PRP Glossary (120 topics)
- Section 7 — Patient Support Resources (8 topics)
STEP THREE
The original Facebook-based PRP Support Group was founded in June 2008 as a “Public Group”. We converted to a “Closed Group” in September 2013 with less than 100 members.
In spite of the rarity of PRP, our membership grew. In fact, on October 1, 2024 we had 2,171 members. On October 2 a totalof 2,170 of our members were summarily denied access to an extensive archive of posts and comments dating back to January, 2014.
All was not lost. As the Administrator of the OLD group I still can access what 2,170 kindred spirits can no longer access. I can stillsearch the archives of the old PRP Support Group/
