Every year since 2013 (year #2 of my own PRP journey), I try to make something special happen during November in an effort to build PRP awareness. There are six tasks on my to-do list for 2018:
❏‰ Update PRP Patient Profiles
❏‰ Identify PRP-Savvy Dermatologists
❏‰ Solicit participation in the UCLA PRP Survey
❏‰ Solicit participation in the OHSU PRP research
❏‰ Advocate for the Rare Skin Disease Referral Initiative
This year, as always, I will attempt to take my own advice: a tincture of time and a pinch of hope.
Why is NOVEMBER designated as PRP Awareness Month?
The simple answer is HISTORY.
EVENT #1 – The first PRP support group was formed in 1997 under the “kind and compassionate leadership” of a Canadian, Jean-Luc Deslauriers (1948 – 2003). Those charter members had been trading letters (snail mail) and emails via AOL and decided to get serious. The first “official” emails from members of the PRP Support Group ( (not to be confused with the PRP Alliance) appeared in November, 1997.
EVENT #2 – Fast forward 16 years. During the spring and summer of 2013 while immobilized by PRP and a subscriber to the PRP Support Group’s email service, I decided to read over 29,000 emails they had archived. During that marathon, I “harvested” core data to build a PRP Community Database. My effort created PRP patient profiles for over 1,500 PRP patients. The data I collected included: location, email address onset date and age, misdiagnoses, date of diagnosis, names of PRP-savvy dermatologists, remission dates, etc. The first PRP Worldwide Census began on November 1, 2013.
It always boggled my mind that after 16 years no one had created a PRP Community Database or promoted a PRP Awareness event.
Today is DAY ONE of PRP Awareness Month. Whether patient or caregiver, this is a time for you to SHARE your PRP journey with others.
A total of 543 have already updated their PRP Patient Profile. Unfortunately 1,772 have not – including 807 members of the PRP Facebook Support Group. Why wait? Share!
During this year’s PRP Awareness Month we will reboot the PRP Worldwide Census. If you are among the 807 PRP Facebookers who have NOT YET updated their PRP Patient Profile, please go to: http://survey.constantcontact.com/…/a07efi9hud6jixkh1…/start
.