papa.bill

The One-Sentence Timeline Editor’s Note: When telling the story of your PRP journey, NEVER begin with “Once upon a time”. Follow in the footsteps of the Bard of the Doghouse… “It was a dark and stormy night”. WHAT IF every PRP patient or caregiver took ONE MINUTE on the first day of every month to

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Dear 一,  I hope you find this letter informational and helpful in caring for our daughter while she is at school. Isabelle has a rare skin disorder called Pityriasis(pit-uh-rie-uh-sis) Rubra Pilaris, more commonly known as PRP to

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. On the Road, Special Issue, July 1, 2014July 1, 2014 Molly and her Mum Molly and her MumJuly 1, 2014 Molly and her Mum  

  It’s time to make history again The PRP global community made history earlier this year. The experiences of over 630 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 Onset to Diagnosis Survey looks back on your own PRP journey —

We all know that the cause of pityriasis rubra pilaris is unknown. We are also painfully aware of the fact that there is no universally approved treatment option for PRP, e.g., FDA or its international equivalents. That said, at least 15 pharmaceuticals are among those currently prescribed by dermatologists for the treatment of PRP. Unfortunately … What works for

PRP 2021 COVID-19 Vaccination Survey December 13, 2021, Plano, Texas Over the past 12 months, a total of 2,144 members of the PRP Facebook Support Group have given the Land of Hope an alternative moniker: the Land of Chat. Total number of posts: 1,931 (161 per month) Total number of comments: 33,564 (2,797 per month)

PRP Gallery of Photos — FEET The challenges we face to body, mind and spirit can be debilitating, demoralizing,  and de-mobilizing. Of ALL the symptoms of pityriasis rubra pilaris I had to endure during my 20-month journey, it was my feet and the impairments to my mobility that topped my list. Swollen. Cracked. Bleeding. Painful. However, once my feet returned

From the Editor:Christine G (Zürich, Switzerland) recently shared a healing milestone experienced by her daughter, Molly. On July 3, 2017, Mum and daughter celebrated “the FIRST smelly socks after four years on this bumpy PRP journey! ” As Christine notes, “Smelly socks and drops of sweat on her legs are so precious for us. Only the PRP community can

  Editor’s Note: I know that posting the cartoons shared by members of the PRP Global Community probably violates a copyright laws somewhere, but sometimes a good chuckle is worth getting a cease and desist order. Posted by Tammy O — Clear Lake, Iowa (April 18, 2019)   “First we’re going to run some teststo