7-PRP Advocacy

You can help make more PRP history   The PRP global community made history earlier this year. The experiences of over 600 PRP patients have been harvested through a 12-question survey focused on the period from onset of PRP symptoms to the official diagnosis of pityriasis rubra pilaris.  The survey looks back on your own […]

Editor’s Note — The Aplastic Anemia & MDS International Foundation developed Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases.a self-advocacy brochure that is worthy of note. It is unlikely that rank and file PRP patients and caregivers will go cover-to-cover and digest every jot and tittle. With that in mind, the following represents the equivalent of CLIFF NOTES

“Walking ’round with blue gloves on my hands.” Karen G, Palo Alto, California. Onset: July 2018 at the age of 56. Posted the following rewrite of “Walking in a Winter Wonderland” to the PRP global community on December 19, 2019. Ho. Ho. Ho Ears are clogged, I’m not listening.Hands and feet, they are stiffening.   

Questions and Answers about PRP Source: PRP (email) Support Group [1997-2016]Revised January 5, 2005 Editor’s Note: When I was diagnosed with PRP in November 2012, it didn’t take me long to find the email-based PRP Support Group. At the time it was the only game in town! In fact, it was a PRP factsheet written/compiled

  Keep Careful Track of Health InformationPrinciple 4 Editor’s Note — The unveiling of Principle 4 is scheduled for  January 26, 2023

Make the Most Out of Every Office Visit  Editor’s Note — The unveiling of Principle 3 is scheduled for January 12, 2022. 

Principle 1Build a Strong Healthcare Team EDITOR, PRP SURVIVAL GUIDE — The authors of “Standing Up for Your Health: Self-advocacy for patients with  rare diseases” want patients with a rare disease to THINK TEAM. The consensus among PRP patients and caregivers, however, is that healthcare professionals involved in the treatment of pityriasis rubra pilaris are

I need your help to continue identifying 100 questions that PRP patients and their caregivers either (a) need to know or (b) want to know. In so doing, 100 Questions will be become the “official” tutorial for and by PRP patients and caregivers. ✓  STEP ONE — Identify the specific questions or general topics ✓  STEP TWO — Organize the questions

On the passing of Tierney Lynch Ratti Condolences from the Land of Hope were swift and sincere. Tierney had left a mark on the PRP global community. Laura N, Kingston upon Hull, Yorkshire, England Very sad news, thinking of her family and friends. Rest in peace now. Frank B, Kitchener, Ontario, Canada You were such

A personal remembrance of my Tonto by Bill McCue September 22, 2020 Tierney Lynch Ratti has been part of my PRP journey from the day I was diagnosed with PRP (November 28, 2012) and joined the old email-based PRP support group, became a subscriber to their list serve and began reading “sharings” from her and