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.

Building the PRP Community Database was my own effort to fight depression. As a member of the PRP Support Group, I began "harvesting" email addresses from over 29,000 archived emails. It has taken over four years to build a database with over 1,700 PRP patients who are current members of the PRP Facebook Support Group (1,146) and/or the PRP Community on RareConnect (260), as well as those who are non-aligned with either (574).

The information we seek in the following survey will support PRP ongoing research at Thomas Jefferson University, and Yale University. While our database is not an official PRP Patient Registry, it will be the cornerstone of any effort by a university teaching hospital to build one.

Thank you for helping me update our PRP Community Database. 

So let's begin.

 
WHO IS COMPLETING THIS PRP PATIENT PROFILE?
I am the patient
I am a caregiver, e.g., spouse, partner, parent
I am a member of the of family or friend of the patient
Other