2018 PRP Patient Profile Update
Progress: 
 
My PRP journey began in August 2012 at the age of 66 with the appearance of a dime-sized red spot on my forehead. Within a few weeks I was misdiagnosed with seborrheic dermatitis. It took another three months, four biopsies and a new dermatologist to be correctly diagnosed with adult onset PRP.

My treatment plan began in December 2012 and included acitretin and the daily slathering of Desonide (face and ears), Clobetasol (palms and soles), and triamcinolone (body). In April 2014, after a 20-month journey, I was declared in remission.

Starting with only one name - mine - it has taken over four years to build a database with nearly 1,700 PRP patients who are current members of the PRP Facebook Support Group (1,192) and/or the PRP Community on RareConnect (280), as well as those who are not aligned with either (574).

The information we seek in the following survey (onset date, onset age and current status) will support PRP ongoing research at Oregon Health and Science diversity, UCLA, USC, Thomas Jefferson University, and Yale University. While our database is not an official PRP Patient Registry, it will be the cornerstone of any future effort by a university teaching hospital to build one.

Regardless of the reason, if you are reluctant to participate in this survey, please contact me at 214-205-0574 (Plano, TX) or via email at bill.mccue@prpAlliance.org.

Thank you for helping me update our PRP Community Database. 

So let's begin.