PRP Alliance

Why read 29,000 emails?

From the Editor

Why read 29,000 emails?

The simple answer: I had PRP and I could.

My first PRP Healing Milestone was my diagnosis of PRP on November 27, 2012 — nearly four months after the tiny red spot appeared on my forehead. For the first time, my journey had a name and a destination: pityriasis rubra pilaris and REMISSION. I was finally aimed in the right direction.

My second Healing Milestone came six weeks later when I was able to wear my sneakers for the first time in three months, and walk 5-1/2 miles. For me, regaining mobility was essential to my mental wellness.

Almost immediately, however,  I suffered my first “official” setback with the profound evaporation of energy. Clearly, my get up and go, got up and went. The fact that I could walk was now overshadowed by the lack of energy TO walk.

Then it happened. I woke up one morning in late January 2013 and sat at my desk like every morning for the previous month. As a subscriber, I  logged into the archives of the email-based PRP Support Group. As a subscriber to the PRP-L List I knew that I could look up conversations by DATE, AUTHOR and and KEYWORD.

It had been my daily routine to review recent conversations for 30 minutes or so I focused on DATE.As a newcomer I didn’t feel qualified to offer comments — I was just an avid onlooker.

Over a period of over 15 years, the PRP Support Group had amassed over 29,000 posts and comments, By 2013 standards the archive was immense. As a reference, however, the Land of Chat (circa 2020) has generated over 25,000 posts and comments in only 12 months alone.

I started harvesting data from the PRP-L List archive in late January, 2013. It was addictive! Names. Locations. Onset dates. Onset ages. Names of dermatologists. I was getting HIGH on data. I must have been in an altered state oof euphoria when I registered prpAlliance.org on February 8, 2013. By Octoberr I had read 29,000 emails. In November I sent emails to over 1,500 PRP patients. But like any HIGH, I crashed when 500 emails were returned as undeliverable.

But I was hooked on data. Welcome to my world. Let the tormenting begin.

The PRP Global Database has a total of 3,476 PRP patient profiles of which 1,204 have been “lost to the ages”, e.g., not a member of the PRP Facebook Support Group and no valid email address. However, the data that was collected back in 2013 is still there.

My third Healing Milestone was when I discovered that I could sit on my butt at my computer from 7:00 AM to 10:00 PM with bathroom breaks and food. I also discovered that I would get so immersed in reading emails that the ever-present discomforts of pain and itch were no longer issues.

Missing data is my pain. Missing data is my  itch.