From the Editor —
I began writing the PRP Survival Guide in November 2013. At first I collected information readily available on the internet which was, unfortunately, redundant, incomplete and too often written for an audience of healthcare professionals. By April 2014 it had become apparent to me that original articles needed to be developed to fill in the gaps. From April 1, 2014 to October 1, 2015, 24 issues (598 pages) were published and distributed to an email list of over 1,000 PRP patients and caregivers.
The Crash of 2017
The photo below represents the destruction of an F-3 tornado. In mid-January 2017 an unexpected crash of a two servers destroyed the PRP Alliance website and it’s backup. Our website suffered the equivalent of an F-5 where only the sidewalk and concrete stairs would remain. The structure would be gone and the contents of the dwelling scattered for miles. Think “total devastation”.
It took a month to confirm that prpAlliance.org could not be salvaged. While I still had 24 issues of the PRP community newsletter backed up on my computer, the PRP Survival Guide (480-plus articles) would have to be reconstructed from scratch.
By mid-May the rollout of the reconstituted PRP Survival Guide began. The first step was the reconfirmation of the basic organization. The goal was to create a logical classification for PRP-related information.
✽ Chapter 2 — Diagnosing PRP
✽ Chapter 3 — Treating PRP
✽ Chapter 4 — Daily Life with PRP
✽ Chapter 5 — PRP Parents and Kids
✽ Chapter 7 — PRP Research
✽ Chapter 8 — PRP Advocacy
Every chapter has a brief introduction to tell readers what to expect. While there is no expectation that family and friends, co-workers and employers, teachers and school administrators will visit the PRP Survival Guide, we can make it easier to the PRP patient/caregiver to provide a link to a specific question/answer.
Chapter 1 was designed to present the Frequently Asked Questions that Newbies might ask. It also reinforces the eight-chapter organization of the PRP Survival Guided gives the user a “taste” of what can be found in Chapters 2-8.
These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers, family and friends, co-workers and employers, teachers and school administrators, and so many more.